calculating proper enzyme dosage

[zoe4life]

Zoe is 2 1/2 yr. weighs 26 pounds. She takes 5 Creon 5's with meals, 3 with snacks. We always give her whole milk mixed with 1/2 & 1/2. For snacks we give her cheese, olives, anything higher in fat. She eats either french toast, pancakes or eggs w/cheese and 2-3 slices of bacon for breakfast. She has pretty bad pancreatic issues, she had a feeding tube when first diagnosed just to catch up. Now we load her up with as much fat, protein & calories as we can. We watch her stools very closely, easily done since she is still in diapers. We have a notebook that we have kept since diagnosis. It has time,creon#, food, stools (time, consist., color, size), antibiotic time, neb, cpt, zantac, vitamax times. We also write any different behavior, signs of sickness, changes at all. This has been extremely helpful for us, anytime there is a change, we can look back at her chart to see what might be going on. We were told that a Creon 5 covers 2-3 grams of fat. We have found it easier just to watch her stools. About 3 months ago (she was taking 4 Creon5's then) she started having more stools per per day and the yellow-orange oil. So we called her nutritionist, who agreed we needed to increase. So for now, that is where we are. Hope this helps!
Jada
Zoe's mom

 

[charl72]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>

I've seen someone post in the past about a certain formula used to decide how much enzymes a person needs. Sorry to be so vague but I can not remember who posted it or what the formula was.



Anyone know how the doctors decide how much someone needs? I believe my son's enzymes need to be increased but the doctors said he's already on a pretty high dose for such a little guy. He weighs 26 lbs. and takes 3 Creon 10's.</end quote></div>

Our daughter has been on a "high dose" of enzymes right from when she was diagnosed at 6 weeks old.<img src="i/expressions/rose.gif" border="0"> That's just the way it is I suppose. Her Consultant checks her weight with the amount of enzymes she is taking and works it out from that. Touch wood, she seems to be on the right dosage. Basically, she mostly eats pretty much the same things at the moment, so it makes life easier, cos we know exactly the right amount of enzyme to give her. At the end of the day, it's your son and you are the one living with him and really I would go on your instinct. Yeah, the Docs, Consultants, know their stuff but they aren't the ones living with your son. You know him far more than anyone else does. Hope this helps.

PS If you do decide to increase the enzymes, just do it gradually.

Take care.<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[charl72]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>

I've seen someone post in the past about a certain formula used to decide how much enzymes a person needs. Sorry to be so vague but I can not remember who posted it or what the formula was.



Anyone know how the doctors decide how much someone needs? I believe my son's enzymes need to be increased but the doctors said he's already on a pretty high dose for such a little guy. He weighs 26 lbs. and takes 3 Creon 10's.</end quote></div>

Our daughter has been on a "high dose" of enzymes right from when she was diagnosed at 6 weeks old.<img src="i/expressions/rose.gif" border="0"> That's just the way it is I suppose. Her Consultant checks her weight with the amount of enzymes she is taking and works it out from that. Touch wood, she seems to be on the right dosage. Basically, she mostly eats pretty much the same things at the moment, so it makes life easier, cos we know exactly the right amount of enzyme to give her. At the end of the day, it's your son and you are the one living with him and really I would go on your instinct. Yeah, the Docs, Consultants, know their stuff but they aren't the ones living with your son. You know him far more than anyone else does. Hope this helps.

PS If you do decide to increase the enzymes, just do it gradually.

Take care.<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[charl72]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>

I've seen someone post in the past about a certain formula used to decide how much enzymes a person needs. Sorry to be so vague but I can not remember who posted it or what the formula was.



Anyone know how the doctors decide how much someone needs? I believe my son's enzymes need to be increased but the doctors said he's already on a pretty high dose for such a little guy. He weighs 26 lbs. and takes 3 Creon 10's.</end quote></div>

Our daughter has been on a "high dose" of enzymes right from when she was diagnosed at 6 weeks old.<img src="i/expressions/rose.gif" border="0"> That's just the way it is I suppose. Her Consultant checks her weight with the amount of enzymes she is taking and works it out from that. Touch wood, she seems to be on the right dosage. Basically, she mostly eats pretty much the same things at the moment, so it makes life easier, cos we know exactly the right amount of enzyme to give her. At the end of the day, it's your son and you are the one living with him and really I would go on your instinct. Yeah, the Docs, Consultants, know their stuff but they aren't the ones living with your son. You know him far more than anyone else does. Hope this helps.

PS If you do decide to increase the enzymes, just do it gradually.

Take care.<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[amber682]

Thaks for all the responses!

Hmm, it does sound like he's on sort of a high dose. The doctors put him on zantac (2ml 2x/day) Oct 11 to help the enzymes work, I haven't noticed a difference though. I am worried about overdoing it, but he hasn't gained any weight since June or maybe a little before. He was always chubby, above the 50th percentile. This has the doctor concerned, as well as me of course. There was a 72 hr. fecal fat test done that showed to much fat passing through. Although he's not going more than the usual once a day, they're very bulky, coming out the leg holes and sometimes top of the diaper. They've been paler than usual, sometimes streaked with orangey color. And only formed once a week tops, otherwise they're usually smushy sort of like frosting and very sticky. I have almost no sense of smell but family tells me they smell pretty bad, especially in comparison to his cousin, same age no CF.

But they say his dose is already pretty high. So we're trying appetite stimulant before bed and zantac to see if he gains anything by Nov. 28 appt. They said they want him to gain a pound a week! I don't think he's gained more than a pound though in about 3 weeks. They're worried about giving him too much and even said to give him less since he's being so picky and not eating a lot. I'm sticking with my gut this time. They either need to increase enzymes, switch brand, or try something else besides zantac. Plus the dietician needed to review the fecal fat test results, so she should have by the time we go back this month.

Thanks everyone so much. I swear as soon as the allergy season ends and the post nasal drip and persistent cough finally goes away (which really had me worried before we figured out it was allergies) now we have this weight issue getting pretty serious. Sorry so long!

 

[amber682]

Thaks for all the responses!

Hmm, it does sound like he's on sort of a high dose. The doctors put him on zantac (2ml 2x/day) Oct 11 to help the enzymes work, I haven't noticed a difference though. I am worried about overdoing it, but he hasn't gained any weight since June or maybe a little before. He was always chubby, above the 50th percentile. This has the doctor concerned, as well as me of course. There was a 72 hr. fecal fat test done that showed to much fat passing through. Although he's not going more than the usual once a day, they're very bulky, coming out the leg holes and sometimes top of the diaper. They've been paler than usual, sometimes streaked with orangey color. And only formed once a week tops, otherwise they're usually smushy sort of like frosting and very sticky. I have almost no sense of smell but family tells me they smell pretty bad, especially in comparison to his cousin, same age no CF.

But they say his dose is already pretty high. So we're trying appetite stimulant before bed and zantac to see if he gains anything by Nov. 28 appt. They said they want him to gain a pound a week! I don't think he's gained more than a pound though in about 3 weeks. They're worried about giving him too much and even said to give him less since he's being so picky and not eating a lot. I'm sticking with my gut this time. They either need to increase enzymes, switch brand, or try something else besides zantac. Plus the dietician needed to review the fecal fat test results, so she should have by the time we go back this month.

Thanks everyone so much. I swear as soon as the allergy season ends and the post nasal drip and persistent cough finally goes away (which really had me worried before we figured out it was allergies) now we have this weight issue getting pretty serious. Sorry so long!

 

[amber682]

Thaks for all the responses!

Hmm, it does sound like he's on sort of a high dose. The doctors put him on zantac (2ml 2x/day) Oct 11 to help the enzymes work, I haven't noticed a difference though. I am worried about overdoing it, but he hasn't gained any weight since June or maybe a little before. He was always chubby, above the 50th percentile. This has the doctor concerned, as well as me of course. There was a 72 hr. fecal fat test done that showed to much fat passing through. Although he's not going more than the usual once a day, they're very bulky, coming out the leg holes and sometimes top of the diaper. They've been paler than usual, sometimes streaked with orangey color. And only formed once a week tops, otherwise they're usually smushy sort of like frosting and very sticky. I have almost no sense of smell but family tells me they smell pretty bad, especially in comparison to his cousin, same age no CF.

But they say his dose is already pretty high. So we're trying appetite stimulant before bed and zantac to see if he gains anything by Nov. 28 appt. They said they want him to gain a pound a week! I don't think he's gained more than a pound though in about 3 weeks. They're worried about giving him too much and even said to give him less since he's being so picky and not eating a lot. I'm sticking with my gut this time. They either need to increase enzymes, switch brand, or try something else besides zantac. Plus the dietician needed to review the fecal fat test results, so she should have by the time we go back this month.

Thanks everyone so much. I swear as soon as the allergy season ends and the post nasal drip and persistent cough finally goes away (which really had me worried before we figured out it was allergies) now we have this weight issue getting pretty serious. Sorry so long!