Am I a fool?

K

kitomd21

New member
I think I already know what most of your answers will be...

I've posted before about my two-year-old and enzyme dosing issues. She's been on Pancrease, Creon, and Zenpep. Stools are very loose and oily - regardless of the formulation. The worst was with Creon. The only thing we haven't tried (whether from your suggestions or her CF doctors) is adding a PPI. I'm wary about putting her on one due to the long-term side effects (e.g., Zantac and increased incidence of pelvic fracture). Have any of you researched PPIs in terms of long-term use and are you concerned for yourself or child with CF? Should I just realize that they may be a necessary evil - even when individuals with CF already have an increased risk of osteoporosis? Placing her on a drug that may contribute to increased bone problems really concerns me.

All drugs have side effects and each individual may be affected in different ways...should I stop struggling with this decision? Her weight is stable, but would love to see her weigh more...
 
K

kitomd21

New member
I think I already know what most of your answers will be...

I've posted before about my two-year-old and enzyme dosing issues. She's been on Pancrease, Creon, and Zenpep. Stools are very loose and oily - regardless of the formulation. The worst was with Creon. The only thing we haven't tried (whether from your suggestions or her CF doctors) is adding a PPI. I'm wary about putting her on one due to the long-term side effects (e.g., Zantac and increased incidence of pelvic fracture). Have any of you researched PPIs in terms of long-term use and are you concerned for yourself or child with CF? Should I just realize that they may be a necessary evil - even when individuals with CF already have an increased risk of osteoporosis? Placing her on a drug that may contribute to increased bone problems really concerns me.

All drugs have side effects and each individual may be affected in different ways...should I stop struggling with this decision? Her weight is stable, but would love to see her weigh more...
 
K

kitomd21

New member
I think I already know what most of your answers will be...
<br />
<br />I've posted before about my two-year-old and enzyme dosing issues. She's been on Pancrease, Creon, and Zenpep. Stools are very loose and oily - regardless of the formulation. The worst was with Creon. The only thing we haven't tried (whether from your suggestions or her CF doctors) is adding a PPI. I'm wary about putting her on one due to the long-term side effects (e.g., Zantac and increased incidence of pelvic fracture). Have any of you researched PPIs in terms of long-term use and are you concerned for yourself or child with CF? Should I just realize that they may be a necessary evil - even when individuals with CF already have an increased risk of osteoporosis? Placing her on a drug that may contribute to increased bone problems really concerns me.
<br />
<br />All drugs have side effects and each individual may be affected in different ways...should I stop struggling with this decision? Her weight is stable, but would love to see her weigh more...
 
V

vbs420

New member
Have you tried Ultrase??

That's the Canadian name; it may be different in the US.

How much are you giving?

What type of diet?
 
V

vbs420

New member
Have you tried Ultrase??

That's the Canadian name; it may be different in the US.

How much are you giving?

What type of diet?
 
V

vbs420

New member
Have you tried Ultrase??
<br />
<br />That's the Canadian name; it may be different in the US.
<br />
<br />How much are you giving?
<br />
<br />What type of diet?
 
K

kitomd21

New member
We haven't tried Ultrase...

She typically eats pureed foods (spaghetti, turkey, beef, veggies), yogurt, and Pediasure. We routinely achieve at least 1500 calories/day. She doesn't snack - each meal must be fed to her. It's been a struggle for her to consume more solid foods as she gags easily, but she is definitely improving.

Upon switching to Zenpep, we were advised to give 4 capsules (5,000 lipase units/capsule) with meals. I've tried upping the dose to 5 without any change in her BMs....
 
K

kitomd21

New member
We haven't tried Ultrase...

She typically eats pureed foods (spaghetti, turkey, beef, veggies), yogurt, and Pediasure. We routinely achieve at least 1500 calories/day. She doesn't snack - each meal must be fed to her. It's been a struggle for her to consume more solid foods as she gags easily, but she is definitely improving.

Upon switching to Zenpep, we were advised to give 4 capsules (5,000 lipase units/capsule) with meals. I've tried upping the dose to 5 without any change in her BMs....
 
K

kitomd21

New member
We haven't tried Ultrase...
<br />
<br />She typically eats pureed foods (spaghetti, turkey, beef, veggies), yogurt, and Pediasure. We routinely achieve at least 1500 calories/day. She doesn't snack - each meal must be fed to her. It's been a struggle for her to consume more solid foods as she gags easily, but she is definitely improving.
<br />
<br />Upon switching to Zenpep, we were advised to give 4 capsules (5,000 lipase units/capsule) with meals. I've tried upping the dose to 5 without any change in her BMs....
 
T

TonyaH

Guest
For Andrew, prevacid is like water...he has to have it. Even missing one dose causes major problems for him. I completely understand your apprehension to add more meds. However, it sounds like you have exhausted all other options. Good luck!
 
T

TonyaH

Guest
For Andrew, prevacid is like water...he has to have it. Even missing one dose causes major problems for him. I completely understand your apprehension to add more meds. However, it sounds like you have exhausted all other options. Good luck!
 
T

TonyaH

Guest
For Andrew, prevacid is like water...he has to have it. Even missing one dose causes major problems for him. I completely understand your apprehension to add more meds. However, it sounds like you have exhausted all other options. Good luck!
 
H

hmw

New member
First, NO, you are not a fool! You are concerned about your daughter and don't want to unnecessarily expose her to risk or unnecessary medications. <img src="i/expressions/heart.gif" border="0"> I hate thinking about the potential for side effects... Emily is on many medications, not just for CF (she has other health conditions too) and it makes me feel sick inside when I think about it too much. But when the alternative is considered, I realize I have little choice, not if I want to keep her healthy.

A few thoughts...
Have you tried probiotics? We've seen that make a difference in Emily's stools.
Also, have you tried varying what types of fats she consumes? She might absorb some better than others.

Those suggestions aside, I do think a ppi might really make an enormous difference. Prevacid has been very helpful for Emily. The pancreas, when functioning properly, helps regulate ph by releasing sodium bicarbonate- so it makes sense that our kids would need help with that, just like they do with enzymes.

When it comes to the risk of fractures and osteoporosis, though, if you are not achieving good nutrient absorption (which will be the case with constant oily stools), her risk of calcium and vit deficiencies is going to be very high, thus increasing her risk of osteoporosis THAT way.

Wishing the very best!
 
H

hmw

New member
First, NO, you are not a fool! You are concerned about your daughter and don't want to unnecessarily expose her to risk or unnecessary medications. <img src="i/expressions/heart.gif" border="0"> I hate thinking about the potential for side effects... Emily is on many medications, not just for CF (she has other health conditions too) and it makes me feel sick inside when I think about it too much. But when the alternative is considered, I realize I have little choice, not if I want to keep her healthy.

A few thoughts...
Have you tried probiotics? We've seen that make a difference in Emily's stools.
Also, have you tried varying what types of fats she consumes? She might absorb some better than others.

Those suggestions aside, I do think a ppi might really make an enormous difference. Prevacid has been very helpful for Emily. The pancreas, when functioning properly, helps regulate ph by releasing sodium bicarbonate- so it makes sense that our kids would need help with that, just like they do with enzymes.

When it comes to the risk of fractures and osteoporosis, though, if you are not achieving good nutrient absorption (which will be the case with constant oily stools), her risk of calcium and vit deficiencies is going to be very high, thus increasing her risk of osteoporosis THAT way.

Wishing the very best!
 
H

hmw

New member
First, NO, you are not a fool! You are concerned about your daughter and don't want to unnecessarily expose her to risk or unnecessary medications. <img src="i/expressions/heart.gif" border="0"> I hate thinking about the potential for side effects... Emily is on many medications, not just for CF (she has other health conditions too) and it makes me feel sick inside when I think about it too much. But when the alternative is considered, I realize I have little choice, not if I want to keep her healthy.
<br />
<br />A few thoughts...
<br />Have you tried probiotics? We've seen that make a difference in Emily's stools.
<br />Also, have you tried varying what types of fats she consumes? She might absorb some better than others.
<br />
<br />Those suggestions aside, I do think a ppi might really make an enormous difference. Prevacid has been very helpful for Emily. The pancreas, when functioning properly, helps regulate ph by releasing sodium bicarbonate- so it makes sense that our kids would need help with that, just like they do with enzymes.
<br />
<br />When it comes to the risk of fractures and osteoporosis, though, if you are not achieving good nutrient absorption (which will be the case with constant oily stools), her risk of calcium and vit deficiencies is going to be very high, thus increasing her risk of osteoporosis THAT way.
<br />
<br />Wishing the very best!
 
M

Mommafirst

Guest
I don't think you are a fool, but I was dying to be a smart mouth and just say yes for fun!!!

PPI's are pretty serious drugs. I have worried about them quite a bit and have even wondered if CF related osteoporosis isn't related to the long term use of these types of drugs. There is no real way of knowing how much of the CF related issues (athritis, osteoporosis, diabetes, etc) are a function of CF progression or the impact of life long meds on a population that is only now starting to age enough to have these problems.

All that being said, I have weighed it all out. When Alyssa's reflux was horrible, she was on Reglan and Prevacid together and she was MISERABLE without it. Now we have her at a place that 15mg of prevacid is enough for her. Her doctors feel its important and that the risk benefit ratio favors being on it for now.

I'm also on PPIs, and I have to take the risk because my quality of life without it is horrible.

The PPIs really do help the enzymes to work better and may be what you need to help Ellie. It is scary to make a long term committment to a strong drug with side effects, so you should make that decision as informed as it can be and with the support of your doctor.
 
M

Mommafirst

Guest
I don't think you are a fool, but I was dying to be a smart mouth and just say yes for fun!!!

PPI's are pretty serious drugs. I have worried about them quite a bit and have even wondered if CF related osteoporosis isn't related to the long term use of these types of drugs. There is no real way of knowing how much of the CF related issues (athritis, osteoporosis, diabetes, etc) are a function of CF progression or the impact of life long meds on a population that is only now starting to age enough to have these problems.

All that being said, I have weighed it all out. When Alyssa's reflux was horrible, she was on Reglan and Prevacid together and she was MISERABLE without it. Now we have her at a place that 15mg of prevacid is enough for her. Her doctors feel its important and that the risk benefit ratio favors being on it for now.

I'm also on PPIs, and I have to take the risk because my quality of life without it is horrible.

The PPIs really do help the enzymes to work better and may be what you need to help Ellie. It is scary to make a long term committment to a strong drug with side effects, so you should make that decision as informed as it can be and with the support of your doctor.
 
M

Mommafirst

Guest
I don't think you are a fool, but I was dying to be a smart mouth and just say yes for fun!!!
<br />
<br />PPI's are pretty serious drugs. I have worried about them quite a bit and have even wondered if CF related osteoporosis isn't related to the long term use of these types of drugs. There is no real way of knowing how much of the CF related issues (athritis, osteoporosis, diabetes, etc) are a function of CF progression or the impact of life long meds on a population that is only now starting to age enough to have these problems.
<br />
<br />All that being said, I have weighed it all out. When Alyssa's reflux was horrible, she was on Reglan and Prevacid together and she was MISERABLE without it. Now we have her at a place that 15mg of prevacid is enough for her. Her doctors feel its important and that the risk benefit ratio favors being on it for now.
<br />
<br />I'm also on PPIs, and I have to take the risk because my quality of life without it is horrible.
<br />
<br />The PPIs really do help the enzymes to work better and may be what you need to help Ellie. It is scary to make a long term committment to a strong drug with side effects, so you should make that decision as informed as it can be and with the support of your doctor.
 
E

ehtansky21

New member
UGH!!!! We were right there with you 4 years ago with Ethan!!! Both my boys are on prilosec now and I am still trying to find a way to get them off, but at this point, it seems that is not happening any time soon.
This is what I did though, to prolong the need for additional meds...

LOTS and LOTS of probiotics...I had the boys at 2 years old on 9 billion units of probiotics..

these seem to work really well!!!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.vitacost.com/NSI-Probiotic-Tabs-for-Kids
">http://www.vitacost.com/NSI-Probiotic-Tabs-for-Kids
</a>
I also add Apple cider vinegar (with the mother) to yogurt and applesauce at breakfast and dinner...this is the only kind I use
<a target=_blank class=ftalternatingbarlinklarge href="http://www.vitacost.com/Bragg-Organic-Raw-Apple-Cider-Vinegar
">http://www.vitacost.com/Bragg-...w-Apple-Cider-Vinegar
</a>

hope this helps!!!!

blessings,
missa

p.s. I friended you on facebook, I would love to keep in touch, as it seems we have the same goals in mind!!!
 
E

ehtansky21

New member
UGH!!!! We were right there with you 4 years ago with Ethan!!! Both my boys are on prilosec now and I am still trying to find a way to get them off, but at this point, it seems that is not happening any time soon.
This is what I did though, to prolong the need for additional meds...

LOTS and LOTS of probiotics...I had the boys at 2 years old on 9 billion units of probiotics..

these seem to work really well!!!
<a target=_blank class=ftalternatingbarlinklarge href="http://www.vitacost.com/NSI-Probiotic-Tabs-for-Kids
">http://www.vitacost.com/NSI-Probiotic-Tabs-for-Kids
</a>
I also add Apple cider vinegar (with the mother) to yogurt and applesauce at breakfast and dinner...this is the only kind I use
<a target=_blank class=ftalternatingbarlinklarge href="http://www.vitacost.com/Bragg-Organic-Raw-Apple-Cider-Vinegar
">http://www.vitacost.com/Bragg-...w-Apple-Cider-Vinegar
</a>

hope this helps!!!!

blessings,
missa

p.s. I friended you on facebook, I would love to keep in touch, as it seems we have the same goals in mind!!!
 
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