A few questions

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Cgosnel2
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A few questions

Postby Cgosnel2 » Thu Dec 28, 2017 11:01 pm

My 8 month old twins tested positive for C. Diff on Dec. 23rd. They have been on flagyl for 6 days now and are supposed to do a 10 day treatment. Their symptoms have not yet improved. My question are: In your experience how long does it typically take to seen an improvement on this medication? Does anyone know if there are any long-terms effects of the medication for infants? I am not asking for medical advice, just guidance in terms of experience and knowledge about how to best advocate for my babies. It has been absolutely miserable lately and it feels like there is no end in sight.

OCmama
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Re: A few questions

Postby OCmama » Fri Dec 29, 2017 12:32 am

Not medical advice - I would push strongly to have them switched to Vancomycin. I would have them seen by a pediatric infectious disease doctor, when my kids had C. diff there were also some children’s hospitals doing Dificid double blind studies.

It is so hard! Hang in there you will get through this!

roy
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Re: A few questions

Postby roy » Fri Dec 29, 2017 7:53 am

First it is not unusual for an 8 month old to test positive for c.diff! It's part of a babies normal gut flora and 3 out of 4 would test positive.
Drs are NOT supposed to test babies for c.diff.
They aquire it during birth or shortly after and it's NOT a disease.
They eliminate it naturally as their gut flora matures and by 2 years old it's gone. (This might even give them immunity in later life)
They do not become sick because their gut has not developed the receptors that react and cause D.
REPEAT c.diff is part of a babies normal healthy gut flora!!!
Drs are supposed to continue looking for other causes of a baby's illness even if a c.diff test is positive.
What are their symptoms?
You should be insisting they are referred to a Dr that knows about c.diff in infants and how it is treated (Or not treated) and will continue to investigate why your babies are sick.
A positive test in a child under 2 years old should never be taken as an indication that c.diff is the only thing thats causing illness.

Ril
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Re: A few questions

Postby Ril » Fri Dec 29, 2017 11:08 am

Hello Cgnosel2 and welcome to the site. Please read the first thread on Rules for Posting for new members.

I am sorry your babies are ill and know how difficult and frustrating it is when your children aren’t well. I cannot emphasize enough how important it is to pay attention to what Roy has told you. I am not sure why your babies were tested and treated but I would quickly find a pediatrician who assured me that they would look for GI issues other than c diff....a pediatric GI specialist should not even be necessary at this point. If that would make you feel better that is an option but a thourough workup by a well respected peds dr would be a good place to start quickly. I would get my children’s records, explain to the new dr’s nurse and try to get in ASAP.

Best of luck,
Rita

roy
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Re: A few questions

Postby roy » Fri Dec 29, 2017 2:05 pm

Also it would be VERY rare for twins to be sick because of c.diff at the same time, it's actually quite hard to spread c.diff (as a disease) and it requires ideal conditions for the bug to cause problems. A virul infection sounds more likely and they incedently have found c.diff.
See an expert, don't let your current Dr continue treatment.

roy
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Re: A few questions

Postby roy » Fri Dec 29, 2017 2:08 pm

And dont let your Dr test to see if its gone!
it probably won't be and that's 100% normal.

Cgosnel2
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Re: A few questions

Postby Cgosnel2 » Fri Dec 29, 2017 2:37 pm

Thank you for your responses! My babies began having diarrhea 8-10 times a day on December 16th, we went to the doctor later that week and he sent out a stool sample for testing. On the 23rd we were called to say that it was positive. What has been said about how this doesn’t necessarily mean infection is helpful! The pediatrician presented it as an infection and put them on Flagyl (1.2ml 4x per day). While on Flagyl, their diarrhea hasn’t improved, they have been vomiting 1-2x per day, and they just showed blood in their stool this morning. The pediatrician did send off another sample- I didn’t know that they weren’t supposed to test for this. However, after consulting with a GI specialist, he has has suggested we stop the Flagyl and treat this as a possible milk intolerance that has occurred in reaction to an Astrovirus they had also tested positive for. This whole situation has been very confusing. I so appreciate the advice that has been provided!

beth22
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Re: A few questions

Postby beth22 » Fri Dec 29, 2017 5:23 pm

I just read your post and was thinking either a milk or gluten intolerance. Good that they are looking into that. There are some very nasty intestinal viruses going around and children/babies are especially vulnerable this season I was told. Hope they are better soon.

Machaon
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Re: A few questions

Postby Machaon » Mon Jan 01, 2018 3:48 pm

Hi Cgosnel2, how are your babies doing, better I hope!

Are your babies taking any probiotics? According to a National Institute of Health article, children with acute diarrhea given Saccharomyces boulardii showed significant improvement. The article, titled: Effects of Saccharomyces boulardii in children with acute diarrhoea, is at the link: https://www.ncbi.nlm.nih.gov/pubmed/15858959

From the Flagyl documentation, diarrhea and vomiting are possible side effects. In my case, it caused some real nasty side effects and caused me to feel worse!

Prior to Dec 16th, did both of your babies seem to have dietary problems with milk or anything else both at the same time? If they were both healthy and symptom free prior to the 16th, I would think that both of them getting the same nasty symptoms at the same time could indicate something contagious. I can't imagine them getting a food allergy or intolerance both at the same time.

Since they both could be reacting badly to the Flagyl, you might be interested in seeing if your doctor would recommend switching to something else, like Vancomycin.

Regardless, I am very concerned about your babies. I believe that we should error on the side of the most serious explanation and not taking any chance of an illness developing into something that could cause long term damage.

Take care, best of luck to you and your babies, Bob
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

Bobbie
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Re: A few questions

Postby Bobbie » Mon Jan 01, 2018 4:47 pm

Agree with others. Vanco if necessary. Flagyl can be nasty stuff. So glad u are going to ped GI . Smart parents.

Reaction could be caused by lactose intolerence after stomach virus. Lots of "bugs" going around.

Hang in there, "This, too, shall pass." Keep us posted.

OCmama
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Re: A few questions

Postby OCmama » Mon Jan 01, 2018 11:24 pm

Agree with Machaon. The first ped GI I saw tried to tell me that my 6 month old had suddenly developed a milk allergy. Never had a problem before and then all of a sudden having diapers filled with only mucus and blood at the same time my daughter was fighting C. diff. Babies CAN have C. diff with symptoms, as was diagnosed and confirmed by son's lead GI. However, most infants will carry C. diff harmlessly. And even if an infant is experiencing a true CDI he/she should NOT be treated unless it is truly life-threatening. And that call (in my opinion) should be made by a C. diff expert. As mentioned above babies may gain some immunity from their time carrying/fighting C. diff; and the cycle of dysbosis and relapsing infections can be very difficult to break.

My baby had C. diff for a long time (6 months), but as instructed by his infectious disease ped and GI ped we treated him with only probiotics and he tested negative last March (this is not intended as medical advice for anyone, only a recounting of our experience). We rested only because he was still experiencing mucus and about 5 stools per day (down from 10+ per day). Now he only goes once per day unless he is sick.

Thinking about you and your babies. I hope it was just a bug and they are on the mend!


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