What are your thoughts???

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Lalabell
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Joined: Fri Feb 22, 2019 7:12 pm

What are your thoughts???

Postby Lalabell » Tue Mar 26, 2019 12:56 pm

Hi everyone!

So our GI tested my daughter for CDiff toxins and the test came back negative. She still continues to have very loose extremely mucusy BM about 4x a day. She cries in pain every time she uses the bathroom. My doc feels that the toxin test was accurate and no further testing is needed for CDiff but I am not so sure I feel the same way. I have read that there can be many false negatives with the toxin test. Is this true?

Also what are your thoughts on this? She has been experiencing these painful BM since August after two back to back rounds of antibiotics. Now she tested negative on the pcr at the height of her symptoms in August. We forgot about CDiff and moved in. She continued to have the same symptoms and did get sick with a sinus infection twice she was out on cefdinir both time and both times the day after she stared to cefdinir her stool hardened. Why would her stool get hard on the cefdinir and then go back to loose after she finished the course? Non of this make sense and no one has any answers.

And though it guidance is much appreciated!

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: What are your thoughts???

Postby beth22 » Tue Mar 26, 2019 1:40 pm

It doesn't sound like c diff to me if her stools improved after she took the cednifir rather than becoming looser. She may have some other type of pathogen. Has the doctor done a regular stool culture on her? I would do that and even one for parasites. SIBO can cause these types of symptoms too. I don't know if it has really been studied in children. The EIA toxin tests are improved now. The hospital where I test follows a positive PCR up with EIA testing and if it is negative, considers the test to be negative. I was like that for 2.5 years. Now that my PCR is negative, I have looser stools. Can't figure that one out either.

Also, you might check her vitamin levels. Deficiencies in iron, B12, B6, folic acid, vitamin D. Some of them can cause looser stools too.

roy
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Re: What are your thoughts???

Postby roy » Tue Mar 26, 2019 1:54 pm

I am a little confused.
All of your posts that mention c.diff tests say the tests were negative, including her first PCR test but she went on to be treated.
What were the Drs reasons for saying she has c.diff (as a disease)?
You also say her BMs improved when she was on cefdinir.
 Cefdinir is a cephalosporin and would be useless in treating c.diff and is a higher risk for causing, if there was any suspicion of c.diff I doubt if a Dr would prescribe it.
I would be wondering if all these antibiotics (that might not have been needed) may have caused dysbiosis and it just needs time to recover.

Lalabell
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Joined: Fri Feb 22, 2019 7:12 pm

Re: What are your thoughts???

Postby Lalabell » Tue Mar 26, 2019 2:58 pm

Thanks you so much for your response Beth and Roy!

She tested negative PCR in August after two rounds of back to back antibiotic and when her symptoms first began. She continued to have symptoms but because of the neg pcr result the doctors ruled out Cdiff. We were going to test her for an IBD but her gastro wanted her to be free from any type of illness including a cold for at least four weeks prior to the IBD testing. She is in pre-K so that was impossible. Her pain and lose bms continued she got two sinus infections both treated by cefdinir and both times while on the cefdinir her stool formed up. I explained this to my ped and she suggested to retest for CDiff. The day after she stopped the cefdinir in January her stools became loose and I bought the sample in and it came back positive PCR. We started her on the flagyl her stool formed up agian and then 15 days off she began to have the loose mucusy stools again. This time my gastro didn’t want to test with the PCR but did the EIA toxin which came back yesterday negative. However her symptoms persist. I feel like I am on a hamster wheel and I can’t get off. I have no answers and pray everyday that this will end and we will have a solution.

roy
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Re: What are your thoughts???

Postby roy » Tue Mar 26, 2019 5:15 pm

If I am reading this correctly she had 4 courses (at least) of antibiotics followed by a recent course of flagyl.
It's not surprising she has gut problems.
It's a shame the positive PCR was not followed immediatley with an EIA to confirm if she had a toxin producing strain of c.diff.
Around half of c.diff strains are harmless but PCR and GDH pick them up and show positive.
I would be keeping c.diff in mind but would be giving serious consideration to what was actually causing her illness.
Just because they found c.diff does not mean it's the only cause.
I would be asking for a referral for a second/third opinion and researching for a knowlagable ped GI/ID.
I would not be happy with having any more meds just because of a Drs "best guess" at a diagnosis.


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