Need thoughts on GI issues for 34 month old CF

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Aboveallislove

Super Moderator
He hasn't been on any antibiotics other than Flagyl so could it still be C-dif? They didn't mention that as an issue but merely bacterial overgrowth. Prilosac is the same acting as Prevacid--ds didn'tlike Prevacid. No, no abdominal surgeries. His explosive poops are actually the stick stuff. thanks for input. sounds like the antibiotics will be route if this doesn't clear from cleaing him and higher probiotics other thoughts much appreciated. THANKYOU everyone!
 
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Aboveallislove

Super Moderator
He hasn't been on any antibiotics other than Flagyl so could it still be C-dif? They didn't mention that as an issue but merely bacterial overgrowth. Prilosac is the same acting as Prevacid--ds didn'tlike Prevacid. No, no abdominal surgeries. His explosive poops are actually the stick stuff. thanks for input. sounds like the antibiotics will be route if this doesn't clear from cleaing him and higher probiotics other thoughts much appreciated. THANKYOU everyone!
 
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Havoc

New member
I would ask specifically about c-diff. Given they are treating with Flagyl, I would put money on c-diff.
 
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Havoc

New member
I would ask specifically about c-diff. Given they are treating with Flagyl, I would put money on c-diff.
 
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schmj4910

New member
I was interested to see that Flagyl is listed as a drug used to treat bacterial overgrowth...

http://emedicine.medscape.com/article/212861-medication#2

Augmentin is also listed. Bactrim is not, perhaps it was used in our case as a first "safe" approach.

Our GI doc said some patients benefit from a routine "mega clean out" with Miralax, like you mentioned. It washes all the bacteria out. That didn't make sense in our case. Our son had such bad "faucet butt", he didn't have any need for more cleaning out! <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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schmj4910

New member
I was interested to see that Flagyl is listed as a drug used to treat bacterial overgrowth...

http://emedicine.medscape.com/article/212861-medication#2

Augmentin is also listed. Bactrim is not, perhaps it was used in our case as a first "safe" approach.

Our GI doc said some patients benefit from a routine "mega clean out" with Miralax, like you mentioned. It washes all the bacteria out. That didn't make sense in our case. Our son had such bad "faucet butt", he didn't have any need for more cleaning out! <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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Aboveallislove

Super Moderator
Havoc, I'm thinking back to our appointment and I want to say I had asked re this b/c the gi put him on such a low dose of flagyl (he's not on it now--that was last outbreak) and what I remember him saying was a low dose was for different purpose (bacterial overgrowth) as oppose to a specific bacteria like c-diff??? all a blur, but thanks for input and I'll defnitely ask.

schmj4910: THANK YOU so much. I was struggling with understanding why ds was "okay" for a while after hospitalization and then after er visit both of which he got cleared out--this would make sense. I'm hoping we got it in time b/c the milk of magnesia and increased culturelle have gotten him back to more consistent poop as oppose to watery one followed by explosion/chunk. I might PM you with more specifics if that's okay???
 
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Aboveallislove

Super Moderator
Havoc, I'm thinking back to our appointment and I want to say I had asked re this b/c the gi put him on such a low dose of flagyl (he's not on it now--that was last outbreak) and what I remember him saying was a low dose was for different purpose (bacterial overgrowth) as oppose to a specific bacteria like c-diff??? all a blur, but thanks for input and I'll defnitely ask.

schmj4910: THANK YOU so much. I was struggling with understanding why ds was "okay" for a while after hospitalization and then after er visit both of which he got cleared out--this would make sense. I'm hoping we got it in time b/c the milk of magnesia and increased culturelle have gotten him back to more consistent poop as oppose to watery one followed by explosion/chunk. I might PM you with more specifics if that's okay???
 
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schmj4910

New member
Yes, PM me, if you'd like to chat more! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm not that experienced in this subject...we've only been treating it for two months. But, I was interested to find someone else dealing with some of the same issues we are (and with boys the same age!).
 
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schmj4910

New member
Yes, PM me, if you'd like to chat more! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm not that experienced in this subject...we've only been treating it for two months. But, I was interested to find someone else dealing with some of the same issues we are (and with boys the same age!).
 
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momtohazel

New member
Our daughter had c-diff. It went undiagosed longer than it should have. Before we received the results, they recommended Flagyl because it is the recommended first line of treatment for both c-diff and bacterial overgrowth.
with c-diff, our daughter was pooping 10x/day and the smell is really, really terrible. what you are describing does not sound like c-diff to me, especially with the issues of constipation and poor appetite. My little one never ate better when she had c-diff, the poor thing was trying to keep up with all the output!
even after she tested neg for c-diff (following two courses of Flagyl back to back) her gut took all of 6 months to recover...
also as a side note...she recently went on antibitotics for a cough and her poop never looked and smelled better which got us thinking about bacterial overgrowth too. we asked about treating bacterial overgrowth at clinic and they explained they usually treat it with a 3 day course of antibiotics 1x/month and they use an antibitotic that stays in the gut (i.e. one that they would not typically use to treat a pulmonary exacerbation)
good luck
ps how about dairy or gluten allergy?
 
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momtohazel

New member
Our daughter had c-diff. It went undiagosed longer than it should have. Before we received the results, they recommended Flagyl because it is the recommended first line of treatment for both c-diff and bacterial overgrowth.
with c-diff, our daughter was pooping 10x/day and the smell is really, really terrible. what you are describing does not sound like c-diff to me, especially with the issues of constipation and poor appetite. My little one never ate better when she had c-diff, the poor thing was trying to keep up with all the output!
even after she tested neg for c-diff (following two courses of Flagyl back to back) her gut took all of 6 months to recover...
also as a side note...she recently went on antibitotics for a cough and her poop never looked and smelled better which got us thinking about bacterial overgrowth too. we asked about treating bacterial overgrowth at clinic and they explained they usually treat it with a 3 day course of antibiotics 1x/month and they use an antibitotic that stays in the gut (i.e. one that they would not typically use to treat a pulmonary exacerbation)
good luck
ps how about dairy or gluten allergy?
 
A

Aboveallislove

Super Moderator
Wonderful. thanks for added input--the fact that he "recovers" every time he gets "cleaned out" and then takes another few weeks of doing great before the cycle begins makes me think more of a recurrent issue of bacterial overgrowth than c-diff.Good to know the 3 day on option and one that stays in the gut. Do either of you (or anyone) have a good GI who maybe could give you some research/case study or SOMETHING for me to give to our GI??? I just don't think they get this issue here much (CF and bacterial overgrowth) and wonder if there is an established 'course of treatment' for mantainence, i.e., something I can point dr to for "treat with X for 3 days 1x per month???" Do you know the name or the med he gave and or have the specifics of when to treat??? I'd love to have a 3day regime that keeps this at bay!!!

Also, to add: His acid reflux is so much worse while this is on going--hiccups, vomitting, smelly breath--which could be acid reflux or the bacterial overgrowth smell??? Not sure if that helps complete the picture.
 
A

Aboveallislove

Super Moderator
Wonderful. thanks for added input--the fact that he "recovers" every time he gets "cleaned out" and then takes another few weeks of doing great before the cycle begins makes me think more of a recurrent issue of bacterial overgrowth than c-diff.Good to know the 3 day on option and one that stays in the gut. Do either of you (or anyone) have a good GI who maybe could give you some research/case study or SOMETHING for me to give to our GI??? I just don't think they get this issue here much (CF and bacterial overgrowth) and wonder if there is an established 'course of treatment' for mantainence, i.e., something I can point dr to for "treat with X for 3 days 1x per month???" Do you know the name or the med he gave and or have the specifics of when to treat??? I'd love to have a 3day regime that keeps this at bay!!!

Also, to add: His acid reflux is so much worse while this is on going--hiccups, vomitting, smelly breath--which could be acid reflux or the bacterial overgrowth smell??? Not sure if that helps complete the picture.
 
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Mistyjo

New member
My daughter was just in the hospital with c diff. It can be nasty! She had to have IV flagyle and Flagyl when she was home for another week. She has major GI issues. She had to have 28inches of colon removed due to chronic constipation. She is now on 1.5 squares of exlax a day with creon enzymes. If she doesn't have a bowel movement every 24hrs we have to do a catheter enema.
 
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Mistyjo

New member
My daughter was just in the hospital with c diff. It can be nasty! She had to have IV flagyle and Flagyl when she was home for another week. She has major GI issues. She had to have 28inches of colon removed due to chronic constipation. She is now on 1.5 squares of exlax a day with creon enzymes. If she doesn't have a bowel movement every 24hrs we have to do a catheter enema.
 
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momtohazel

New member
thank you for the link. it was helpful. our daughter was treated with keflex for her last cough and that seemed effective for bacterial overgrowth (if that is in fact what she has)
also found it interesting about the role of acid supressing drugs in BO. our kiddo does not take this - also heard this can make one more suseptible to c-diff
good luck and i look forward to hearing anything else you might learn about this.
we have only met with one GI doc - narcowitz out of denver (we are in missoula, mt) - he does outreach in billins, mt which is still 6 hrs away from us. if he was easier to reach, i would contact him.
it was our cf nutritionist and pulmonologist that mentioned the 3day tx option. but i see that is outlined in the article in the link posted
 
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momtohazel

New member
thank you for the link. it was helpful. our daughter was treated with keflex for her last cough and that seemed effective for bacterial overgrowth (if that is in fact what she has)
also found it interesting about the role of acid supressing drugs in BO. our kiddo does not take this - also heard this can make one more suseptible to c-diff
good luck and i look forward to hearing anything else you might learn about this.
we have only met with one GI doc - narcowitz out of denver (we are in missoula, mt) - he does outreach in billins, mt which is still 6 hrs away from us. if he was easier to reach, i would contact him.
it was our cf nutritionist and pulmonologist that mentioned the 3day tx option. but i see that is outlined in the article in the link posted
 
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