Am I a fool?

[ehtansky21]

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.
<br />This is what I did though, to prolong the need for additional meds...
<br />
<br />LOTS and LOTS of probiotics...I had the boys at 2 years old on 9 billion units of probiotics..
<br />
<br />these seem to work really well!!!
<br /> <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><br />
<br />I also add Apple cider vinegar (with the mother) to yogurt and applesauce at breakfast and dinner...this is the only kind I use
<br /> <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><br />
<br />
<br />hope this helps!!!!
<br />
<br />blessings,
<br />missa
<br />
<br />p.s. I friended you on facebook, I would love to keep in touch, as it seems we have the same goals in mind!!!

 

[JORDYSMOM]

It really stinks that we have to make choices that put us between a rock & a hard spot.

For me, the PPI is the lesser of two evils. If I don't take it, I aspirate into my lungs at night. I wake up choking on acid. I've also had ulcers from the acid.

Never feel foolish for wanting the best for your child. <img src="i/expressions/heart.gif" border="0">

Stacey

 

[JORDYSMOM]

It really stinks that we have to make choices that put us between a rock & a hard spot.

For me, the PPI is the lesser of two evils. If I don't take it, I aspirate into my lungs at night. I wake up choking on acid. I've also had ulcers from the acid.

Never feel foolish for wanting the best for your child. <img src="i/expressions/heart.gif" border="0">

Stacey

 

[JORDYSMOM]

It really stinks that we have to make choices that put us between a rock & a hard spot.
<br />
<br />For me, the PPI is the lesser of two evils. If I don't take it, I aspirate into my lungs at night. I wake up choking on acid. I've also had ulcers from the acid.
<br />
<br />Never feel foolish for wanting the best for your child. <img src="i/expressions/heart.gif" border="0">
<br />
<br />Stacey

 

[LouLou]

Why not add the PPI and see if you can find an enzyme that works. Get stable...say 2-3 months and then try reducing the PPI use. It seems the immediate goal needs to be finding an enzyme that works. You have tried all 3 FDA approved versions. Ultrase is no longer on the market. So go with the one that worked the best and add the PPI. Hope it works.

 

[LouLou]

Why not add the PPI and see if you can find an enzyme that works. Get stable...say 2-3 months and then try reducing the PPI use. It seems the immediate goal needs to be finding an enzyme that works. You have tried all 3 FDA approved versions. Ultrase is no longer on the market. So go with the one that worked the best and add the PPI. Hope it works.

 

[LouLou]

Why not add the PPI and see if you can find an enzyme that works. Get stable...say 2-3 months and then try reducing the PPI use. It seems the immediate goal needs to be finding an enzyme that works. You have tried all 3 FDA approved versions. Ultrase is no longer on the market. So go with the one that worked the best and add the PPI. Hope it works.

 

[ktsmom]

I'll chime in that I completely understand and share your concerns over PPI's. Our DD is on Prevacid. I know from trial and error that it made a huge difference several years ago. I have become complacent since then so I am glad for your post and everyone's responses.

We are in the middle of adjusting Creon dosage (fine-tuning because of stomach aches, constipation) and it is amazing how much difference there can be. We've gone to more frequent stools but now she looks to me like she has lost weight (we have doc visit in two more weeks). So I do understand how frustrating this can be. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I hope you get a solution for your daughter.

 

[ktsmom]

I'll chime in that I completely understand and share your concerns over PPI's. Our DD is on Prevacid. I know from trial and error that it made a huge difference several years ago. I have become complacent since then so I am glad for your post and everyone's responses.

We are in the middle of adjusting Creon dosage (fine-tuning because of stomach aches, constipation) and it is amazing how much difference there can be. We've gone to more frequent stools but now she looks to me like she has lost weight (we have doc visit in two more weeks). So I do understand how frustrating this can be. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I hope you get a solution for your daughter.

 

[ktsmom]

I'll chime in that I completely understand and share your concerns over PPI's. Our DD is on Prevacid. I know from trial and error that it made a huge difference several years ago. I have become complacent since then so I am glad for your post and everyone's responses.
<br />
<br />We are in the middle of adjusting Creon dosage (fine-tuning because of stomach aches, constipation) and it is amazing how much difference there can be. We've gone to more frequent stools but now she looks to me like she has lost weight (we have doc visit in two more weeks). So I do understand how frustrating this can be. <img src="i/expressions/face-icon-small-mad.gif" border="0"> I hope you get a solution for your daughter.

 

[Mom2Max]

Before adding prevacid, Max would vomit several times a week, which included a cough that would start while he was sleeping and ended with him vomiting in his bed - at which time the coughing would stop. After adding prevacid, his vomiting has stopped. Due to costs (out-of-pocket) $260/3 month supply, his doctor suggested giving it to Max every other day, which has worked well. That said, you may be able to give it to Ellie daily to see if you can get her bm's "normal" and then taper off until you find the right balance. I hate that CF constantly forces us to choose (or figure out) the "lesser evil". Good luck. I hope that you get it worked out soon.

 

[Mom2Max]

Before adding prevacid, Max would vomit several times a week, which included a cough that would start while he was sleeping and ended with him vomiting in his bed - at which time the coughing would stop. After adding prevacid, his vomiting has stopped. Due to costs (out-of-pocket) $260/3 month supply, his doctor suggested giving it to Max every other day, which has worked well. That said, you may be able to give it to Ellie daily to see if you can get her bm's "normal" and then taper off until you find the right balance. I hate that CF constantly forces us to choose (or figure out) the "lesser evil". Good luck. I hope that you get it worked out soon.

 

[Mom2Max]

Before adding prevacid, Max would vomit several times a week, which included a cough that would start while he was sleeping and ended with him vomiting in his bed - at which time the coughing would stop. After adding prevacid, his vomiting has stopped. Due to costs (out-of-pocket) $260/3 month supply, his doctor suggested giving it to Max every other day, which has worked well. That said, you may be able to give it to Ellie daily to see if you can get her bm's "normal" and then taper off until you find the right balance. I hate that CF constantly forces us to choose (or figure out) the "lesser evil". Good luck. I hope that you get it worked out soon.

 

[CFmami]

My daughter is taking Ranitidine. Her doctor told me this would help with her acid reflux. Does anyone know if these kind of med contribute to Tardive Dyskinesia, a condition causing involuntary repetitive movement?

 

[CFmami]

My daughter is taking Ranitidine. Her doctor told me this would help with her acid reflux. Does anyone know if these kind of med contribute to Tardive Dyskinesia, a condition causing involuntary repetitive movement?

 

[CFmami]

My daughter is taking Ranitidine. Her doctor told me this would help with her acid reflux. Does anyone know if these kind of med contribute to Tardive Dyskinesia, a condition causing involuntary repetitive movement?

 

[hmw]

I know Reglan can be associated with this, but that is a different class of medication than the ppi's and h2 blockers.

 

[hmw]

I know Reglan can be associated with this, but that is a different class of medication than the ppi's and h2 blockers.

 

[hmw]

I know Reglan can be associated with this, but that is a different class of medication than the ppi's and h2 blockers.

 

[kitomd21]

Ugh. Thanks everybody for your input!! Seems like this may be the road we are destined to travel...as with many other CF-related issues.

She was on Zantac for a short time as an infant due to a cough that the doctor thought was characteristic for throat irritation from reflux. The cough resolved after starting Zantac...we took her off of Zantac a few months later. She used to vomit from gagging on food and doesn't suffer from GERD. However, I understand that PPIs can alter pH for improved enzyme efficacy.

She was on antibiotics during a hospitalization at two-weeks-old and also for an ear infection later that year. Another question...would probiotics help given that her GI flora aren't necessarily imbalanced?

Here's another joyful side-effect of PPIs...pneumonia (<a target=_blank class=ftalternatingbarlinklarge href="http://www.health.harvard.edu/fhg/updates/do-ppis-have-long-term-side-effects.shtml).">http://www.health.harvard.edu/...m-side-effects.shtml).</a> Yes, pneumonia. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Also, risks of C. difficile infection may increase due to PPI use (see previous link and <a target=_blank class=ftalternatingbarlinklarge href="http://www.medscape.com/viewarticle/721579).">http://www.medscape.com/viewarticle/721579).</a> This stinks.