Need thoughts on GI issues for 34 month old CF

[Aboveallislove]

DS will be 3 in June. Since 6 months he's had GI issues. One hospitalization for IDOS, although from later conversations drs don't know for sure it was that. Prior to that he had constipation with marble poops, etc.. After release he started eating solids like crazy, gained a couple pounds in a month etc. Then his intake went down, more acid reflux, more vomitting, pooped watery, or explosions with little chunks, stomach sounded like a drain with draino, balooning stomach, etc etc. Xrays showed copious stole and gas, so upped the meds, cleaned out most but still not back to normal, after3 months until ended up back in ER with vomitting. They concluded a stomach bug, but that expediated GI and after lots of other tests they shoot in dark and did flagile. After that he did great but still not real peanut-butter consistency poops as they wanted,still a tad to watery, but other symptoms gone and no explosions with stickier stuff. Did great for 1 month and then CF appointment wanted us to cut back on supplment to get more solids, did so his poop got thicker (nice consistency), but missed a day here and there, gave more miralax, etc. never marble-hard, but he did have propblems/pain when going even when peanut butter consistency. 3 nights ago woke with horrible tummy ache and pain and draino sound back. Ditto 2 nights ago.Am working with GI to up miralax and add milk o magnesia and upping probiotic (culturelle) from 2 to 6 and checking in on Monday. Really don't want another dose of antibiotics b/c he had a really hard time--he does great on all his meds but Flagile made him vomit and dh had to hold him down and take time off work. They'd do a different one but still hoping to avoid. But does anyone have any experience or thoughts on what is going on????? Suggestions????

 

[Aboveallislove]

DS will be 3 in June. Since 6 months he's had GI issues. One hospitalization for IDOS, although from later conversations drs don't know for sure it was that. Prior to that he had constipation with marble poops, etc.. After release he started eating solids like crazy, gained a couple pounds in a month etc. Then his intake went down, more acid reflux, more vomitting, pooped watery, or explosions with little chunks, stomach sounded like a drain with draino, balooning stomach, etc etc. Xrays showed copious stole and gas, so upped the meds, cleaned out most but still not back to normal, after3 months until ended up back in ER with vomitting. They concluded a stomach bug, but that expediated GI and after lots of other tests they shoot in dark and did flagile. After that he did great but still not real peanut-butter consistency poops as they wanted,still a tad to watery, but other symptoms gone and no explosions with stickier stuff. Did great for 1 month and then CF appointment wanted us to cut back on supplment to get more solids, did so his poop got thicker (nice consistency), but missed a day here and there, gave more miralax, etc. never marble-hard, but he did have propblems/pain when going even when peanut butter consistency. 3 nights ago woke with horrible tummy ache and pain and draino sound back. Ditto 2 nights ago.Am working with GI to up miralax and add milk o magnesia and upping probiotic (culturelle) from 2 to 6 and checking in on Monday. Really don't want another dose of antibiotics b/c he had a really hard time--he does great on all his meds but Flagile made him vomit and dh had to hold him down and take time off work. They'd do a different one but still hoping to avoid. But does anyone have any experience or thoughts on what is going on????? Suggestions????

 

[Ratatosk]

Is he on enzymes? Or is he pancreatic sufficient?

Has he been tested for C Diff?

When DS was a baby, we'd have to give him milk of mag whenever his eating would taper off and he'd get constipated. Would get him cleaned out and he'd be fine for awhile.

 

[Ratatosk]

Is he on enzymes? Or is he pancreatic sufficient?

Has he been tested for C Diff?

When DS was a baby, we'd have to give him milk of mag whenever his eating would taper off and he'd get constipated. Would get him cleaned out and he'd be fine for awhile.

 

[Aboveallislove]

Thanks so much Liza. Yes, he is on enzymes and has been since 10 days old. He is at the high end of the safe range for those. They did not test for C diff saying that too many things to test for and would do the same thing anyway. The challenge I have is that it doesn't seem to be just constipation because b/f flagyl they did xrays, barium enima, etc. and we had him really clear but he was still having all the issues. It is groundhog day basically--eats like a champ for 1 month, gains 1-2 pounds in that time, then intake slows, tummy hurts, more acid reflux, poop goes from peanut butter to water/explosions with stickier things, bloated tummy, drano sound. . . . augh. Help??!!!

 

[Aboveallislove]

Thanks so much Liza. Yes, he is on enzymes and has been since 10 days old. He is at the high end of the safe range for those. They did not test for C diff saying that too many things to test for and would do the same thing anyway. The challenge I have is that it doesn't seem to be just constipation because b/f flagyl they did xrays, barium enima, etc. and we had him really clear but he was still having all the issues. It is groundhog day basically--eats like a champ for 1 month, gains 1-2 pounds in that time, then intake slows, tummy hurts, more acid reflux, poop goes from peanut butter to water/explosions with stickier things, bloated tummy, drano sound. . . . augh. Help??!!!

 

[Rebjane]

What is he on Flagyl for?

 

[Rebjane]

What is he on Flagyl for?

 

[schmj4910]

Our son has similar problems. He was diagnosed with "bacterial overgrowth". Basically, too much bacteria in the small intestine. Just Google: bacterial overgrowth, for more info. Our current treatment is one week of oral antibiotics per month alternating Bactrim and Augmentin (meaning one month Bactrim, next month Augmentin). We also use probiotics (Acidophilis) and Yo-Baby/Yo-Toddler yogurt. You mentioned having relief for 30 days and then symptoms came back. That sounded like bacterial overgrowth to me.

I was skeptical at first, but since starting the treatment (2 months ago), we have seen a 360 degree turn around in our son's appetite. He barely ate and hasn't gained weight in a year. Now, he is always hungry! Mealtime is such a pleasure now!

They rotate the antibiotics and use low doses to combat developing a resistance/tolerance.

Other things to consider: Crohn's and Celiac. Our GI doc said Crohn's would have bloody stools, which our son did not have. Celiac is a simple blood test. Our son tested negative for Celiac.

I see you are managing constipation with the Miralax, etc. Are you using a daily maintenance dose, or just treating when he has signs of constipation? Are you also using something for reflux?

 

[schmj4910]

Our son has similar problems. He was diagnosed with "bacterial overgrowth". Basically, too much bacteria in the small intestine. Just Google: bacterial overgrowth, for more info. Our current treatment is one week of oral antibiotics per month alternating Bactrim and Augmentin (meaning one month Bactrim, next month Augmentin). We also use probiotics (Acidophilis) and Yo-Baby/Yo-Toddler yogurt. You mentioned having relief for 30 days and then symptoms came back. That sounded like bacterial overgrowth to me.

I was skeptical at first, but since starting the treatment (2 months ago), we have seen a 360 degree turn around in our son's appetite. He barely ate and hasn't gained weight in a year. Now, he is always hungry! Mealtime is such a pleasure now!

They rotate the antibiotics and use low doses to combat developing a resistance/tolerance.

Other things to consider: Crohn's and Celiac. Our GI doc said Crohn's would have bloody stools, which our son did not have. Celiac is a simple blood test. Our son tested negative for Celiac.

I see you are managing constipation with the Miralax, etc. Are you using a daily maintenance dose, or just treating when he has signs of constipation? Are you also using something for reflux?

 

[Havoc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i> What is he on Flagyl for?</end quote>

Likely c-diff, which would explain a lot of the other symptoms too.

 

[Havoc]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i> What is he on Flagyl for?</end quote>

Likely c-diff, which would explain a lot of the other symptoms too.

 

[schmj4910]

I just saw that your Topic Summary was "Recurrent bacterial overgrowth?" So perhaps you were already aware and my last post will not be that helpful. Sorry! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[schmj4910]

I just saw that your Topic Summary was "Recurrent bacterial overgrowth?" So perhaps you were already aware and my last post will not be that helpful. Sorry! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Aboveallislove]

Schmj--no very helpful to know what they did as treatment. They did flagyl thinking it might be bacterial overgrowth. We do miralax 1 dose per day for maintence, upped or down depending on what he eats/poops. He is on max of both Zantac and Prilosac in addition. I think they ruled out celias and crone, but will confirm. are bactrim and augmentin for gi overgrowth? bactrim is the one that they would give if he has an excerbation--he isn't on any antibiotics for lung stuff. We also do daily probiotics (culturelle)--2 a day but have upped to 6 to try to get in control. I guess what I'm looking for is the way to keep this in check--i'm concerned though using augmentin/bactrim b/c don't want his lung stuff to get resitant. They had mentioned another one besides Flagyl given his problems with it. So thoughts on how to prevent??? Anything I'm missing/should ask? suggest/push for?? THANKS!!!!

 

[Aboveallislove]

Schmj--no very helpful to know what they did as treatment. They did flagyl thinking it might be bacterial overgrowth. We do miralax 1 dose per day for maintence, upped or down depending on what he eats/poops. He is on max of both Zantac and Prilosac in addition. I think they ruled out celias and crone, but will confirm. are bactrim and augmentin for gi overgrowth? bactrim is the one that they would give if he has an excerbation--he isn't on any antibiotics for lung stuff. We also do daily probiotics (culturelle)--2 a day but have upped to 6 to try to get in control. I guess what I'm looking for is the way to keep this in check--i'm concerned though using augmentin/bactrim b/c don't want his lung stuff to get resitant. They had mentioned another one besides Flagyl given his problems with it. So thoughts on how to prevent??? Anything I'm missing/should ask? suggest/push for?? THANKS!!!!

 

[Havoc]

A lot of stuff is missing it seems, or misunderstood.

When antibiotics are given in high doses it kills off even the good bacteria that normally live in the gut. This allows organisms like Clostridium difficile to take over. C-diff will often cause the explosive diarrhea like you described. I suppose you could call this bacterial overgrowth, as the c-diff just goes crazy in the absence of competing normal gut flora. Flagyl is usually the first course of treatment for c-diff, although vancomycin is sometimes used or fidaxomicin.

Probiotics are important during antibiotic treatment to replenish the normal gut flora and prevent c-diff from getting out of control. Probiotics can also be used alone or in conjunction with the medications listed above for treatment of c-diff.

 

[Havoc]

A lot of stuff is missing it seems, or misunderstood.

When antibiotics are given in high doses it kills off even the good bacteria that normally live in the gut. This allows organisms like Clostridium difficile to take over. C-diff will often cause the explosive diarrhea like you described. I suppose you could call this bacterial overgrowth, as the c-diff just goes crazy in the absence of competing normal gut flora. Flagyl is usually the first course of treatment for c-diff, although vancomycin is sometimes used or fidaxomicin.

Probiotics are important during antibiotic treatment to replenish the normal gut flora and prevent c-diff from getting out of control. Probiotics can also be used alone or in conjunction with the medications listed above for treatment of c-diff.

 

[schmj4910]

Our GI did not do any tests, just said, "Let's treat and see how it goes." I was also worried about antibiotic resistance and was told (I also read online) that is why they alternate the drugs and use low doses. And that I should not worry about resistance. Both the Bactrim and Augmentin are used to treat his bacterial overgrowth. Our son has no lung bugs, yet.

I held off treating for a few months because of my fear of antibiotic resistance. I truly wish I hadn't. Looking at the big picture, Bactrim is a very mild antibiotic. Even if he develops a resistance, there are plenty other drugs to choose from. We need to treat the problems as they come. Our son needs to be healthy now to absorb and grow. He is feeling a lot better now.

From my reading online, this condition will be ongoing. We will treat as we need to.

As for prevention, I read about a diet that may lessen the symptoms. For us, diets never work, because our son only eats what he eats and it is too hard to restrict certain foods. Surgery was also listed for severe symptoms.

I read that there are a few tests to confirm a diagnosis, like a Hydrogen Breath Test, and testing a sample of fluid from the small intestine. You could ask to have those tests done.

I'm glad you do a daily dose of Miralax, otherwise you could be on a roller coaster of constipation/diarrhea. We are using Lansoprazole (Prevacid) for reflux. I'm not sure if that is similar to the ones you are using.

Has your son had any abdominal surgery? Ours has, and that could be contributing to the bacterial overgrowth.

 

[schmj4910]

Our GI did not do any tests, just said, "Let's treat and see how it goes." I was also worried about antibiotic resistance and was told (I also read online) that is why they alternate the drugs and use low doses. And that I should not worry about resistance. Both the Bactrim and Augmentin are used to treat his bacterial overgrowth. Our son has no lung bugs, yet.

I held off treating for a few months because of my fear of antibiotic resistance. I truly wish I hadn't. Looking at the big picture, Bactrim is a very mild antibiotic. Even if he develops a resistance, there are plenty other drugs to choose from. We need to treat the problems as they come. Our son needs to be healthy now to absorb and grow. He is feeling a lot better now.

From my reading online, this condition will be ongoing. We will treat as we need to.

As for prevention, I read about a diet that may lessen the symptoms. For us, diets never work, because our son only eats what he eats and it is too hard to restrict certain foods. Surgery was also listed for severe symptoms.

I read that there are a few tests to confirm a diagnosis, like a Hydrogen Breath Test, and testing a sample of fluid from the small intestine. You could ask to have those tests done.

I'm glad you do a daily dose of Miralax, otherwise you could be on a roller coaster of constipation/diarrhea. We are using Lansoprazole (Prevacid) for reflux. I'm not sure if that is similar to the ones you are using.

Has your son had any abdominal surgery? Ours has, and that could be contributing to the bacterial overgrowth.