Post C-Diff, Family thinking I'm paranoid...

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maxny2
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Post C-Diff, Family thinking I'm paranoid...

Postby maxny2 » Fri Nov 24, 2017 9:42 pm

We are visiting relatives for txgiving in US Midwest. My spouse thinks I'm nuts because I don't want our 2.5 year-old daughter to visit my Grandfather (who had surgery 3 months ago) at post-surgery inpatient rehab/nursing home facility.

BUT, he has seen her every day we've been here, outside of the nursing home. We pick him up and take him to his home where we are staying for the week, for plentiful visiting time with his great-granddaughter and other relatives.

Basically he and my father and wife want to show her off to some of the staff and friends at the rehab/nursing home, which I think is not worth the risk. They think i'm being mean/paranoid/a spoil-sport.

Of course I am painfully aware of the prevalence of C Diff and other superbugs at hospitals and nursing homes, and to me even if it is just a 1% risk, why take it, for a trivial reason? Toddlers put everything in their mouths. And it's not like the only way she can see him is us going there.

I don't want unnecessary antibiotics, and I don't want unnecessary visits to hospitals. I nearly died, 2 relapses and hospitalizations. I take it seriously.

Anyone had similar issues with family not taking one's post c diff concerns seriously?

PS. I posted here a bunch a year ago as maxny1, but don't have access to the email I used. Hope everyone here is well or getting thru what they are getting thru.

NanciT
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby NanciT » Sat Nov 25, 2017 1:53 am

Hi

I think it's difficult for anyone to understand how very difficult this illness can be and getting over the fear can take a long time. I would explain how sick you were and that any environment ( hospitals, nursing homes etc) make you very reluctant. I think it's reasonable but sometimes people just can understand and it can be frustrating.

Wish I had some better advice!!

Hang in there

NanciT

Machaon
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby Machaon » Sat Nov 25, 2017 12:31 pm

Hi maxny2!

Glad that you have recovered from C-diff! Nice going!

I would never let a toddler visit a hospital or a nursing home, unless under very strict supervision. Not after what I went thru, after my visit to a hospital, and not being careful enough with washing my hands.

You might feel uncomfortable sticking with your decision to keep your toddler away from the nursing home, but imagine how bad you would feel if your toddler went to the nursing home and contracted C-diff!

The old adage: Better safe than sorry!

Regards, Bob
Male, age 73. South Florida. Retired senior computer systems analyst and programmer.

30+ yrs of CHF, perm afib, extremely sensitive asthma, autoimmune. Ex C-diff?

Diet: 7 low cal meals, 1500 cals, 4 eggs per day, 3 large salads, cereal, yogurt, cheese

maxny2
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby maxny2 » Sun Dec 03, 2017 10:50 pm

Unfortunately my wife and father took her without telling me, as I had previously made it clear that I was not okay with it.

Not only that but it was Friday night 'Popcorn' night and they let her eat the nursing home popcorn.

And now 10 days later she just started having very loose yellow D every hour. She's never gone this frequently, even when she was an infant. Hope and pray its just a stomach bug, but it keeps coming, as I remember all too well.

Can't remember if I'm supposed to wait 2 more days until I get her tested, or just go. She's about 3, not sure if she's past the age when most toddlers/infants are carriers.

MKW
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby MKW » Sun Dec 03, 2017 11:11 pm

Hi, I am sure you are furious and very worried. Remember, even though yellow D is a nightmarish sign for all of us, it can be a totally normal sign of just fast transit.
When anyone in my house has gone to a hospital I make them strip down as soon as they come in the door, put all clothes directly in washing machine, and go shower. The point is you have a totally valid reason to have worried.
As far as nursing homes, my PCP is participating in the Pfizer clover c Diff trial, and was just telling me he enrolled one of his patients that works in a nursing home. I guess she has a hospital procedure she is scheduled for soon. His exact words to me were “I hope they gave her the real vaccine, because you know she carries it”.
Your daughter with a healthy microbiome is likely ok, and kids get D all the time. But your family really needs to get more educated about this. ... so sorry you are having to worry like this over a little one!

Machaon
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby Machaon » Mon Dec 04, 2017 11:34 am

Hi maxny2!

Sorry to hear about your daughter's miserable diarrhea! Poor girl, I feel so sorry for her (and for you!)

There are other contagious infections, besides C-diff, that are prevalent in most nursing homes, such as: Norovirus, E. coli, Salmonella, Shigella and MRSA. Not exactly the place to take a toddler, unless one wants to play russian roulette with her health!

I wish your daughter a quick recovery and hope that it is a minor ailment!

Best of luck and health, Bob
Male, age 73. South Florida. Retired senior computer systems analyst and programmer.

30+ yrs of CHF, perm afib, extremely sensitive asthma, autoimmune. Ex C-diff?

Diet: 7 low cal meals, 1500 cals, 4 eggs per day, 3 large salads, cereal, yogurt, cheese

beth22
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby beth22 » Tue Dec 05, 2017 2:30 am

My mom's nursing home facility had norovirus about this time last year and the whole place was quarantined for a month! My mom had it too, but thankfully, just a minor case - D, but no vomiting..

maxny2
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby maxny2 » Tue Dec 05, 2017 11:48 pm

Thanks for the support. I didn't think I was being crazy. Young children are vulnerable, and superbugs are epidemic...

Yesterday was better, just 2 or 3, but then this evening it was almost like Sunday again, bad. Fingers crossed. I'll call her doc tomorrow if it hasn't stopped. Really don't want her on any broad spectrum antibiotics, really just don't want this to be CDI.

Machaon
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby Machaon » Wed Dec 06, 2017 12:25 pm

Hi maxny2!

I hope that your daughter is doing better this morning!

Has your little girl's misery changed your wife's or your father's inclination to take her back to the nursing home ever again!? Did they wash her hands, at all, at the nursing home, especially before eating popcorn?

If they do decide to take her back to the nursing home, perhaps they would agree to use hands wipes, or wash her hands while she is there.

Hoping for the best... Bob
Male, age 73. South Florida. Retired senior computer systems analyst and programmer.

30+ yrs of CHF, perm afib, extremely sensitive asthma, autoimmune. Ex C-diff?

Diet: 7 low cal meals, 1500 cals, 4 eggs per day, 3 large salads, cereal, yogurt, cheese

iamsick
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby iamsick » Wed Dec 06, 2017 12:40 pm

I know exactly how you feel! My husband was in the hospital this past July for back surgery and wanted me to bring the 8 yr granddaughter to visit. I said no way would I expose her to all those germs. I did not even go to visit the my hubby of 41 years. Did drop him off and picked him up but, would not step my foot in the door! He was there about 5 days. He thinks I've gone nuts since I've had cdiff ~ 3 yrs ago, oh well. I can live with his opinion better than my family member or myself having cdiff.

Hoping your granddaughter is better today:)
Teresa_61

maxny2
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby maxny2 » Sat Dec 09, 2017 5:11 pm

Update, my daughter's pediatrician said it could be CDI carriage/low-grade infection, and, of course, it could be any number of other GI bugs that can look similar.

She ordered the Toxin A & B test.

She made one point: if results are negative we can rule it out, one less thing to worry about. Even if positive results don't necessarily mean treat. As opposed to some of the general providers I dealt with when I had active infection, she was quite knowledgeable about CDI.

She said a 2 or 3 year-old testing positive for C diff is more meaningful than an infant testing positive. By 1 year, she said, the majority of children are not positive for CDI.

MKW
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby MKW » Sat Dec 09, 2017 7:45 pm

Sounds like you are VERY fortunate to have gone to a knowledgeable and competent doctor. I felt like the hardest part of dealing with CDiff was the ignorant medical care. That scared me more than anything.
I wanted to tell you when my daughter (now 20) was about that age she had D for about two weeks that resolved, and I was told it was likely E. coli, but they didn’t treat her. I took her to the doctor at least twice, but they just told me to wait it out and it would resolve. And it did. I never really knew what she had.
Also, there is a poster on here named OCmama. You may want to search her older posts. Her whole family got C Diff. Her, her husband, and two or three children. I know she dealt with multiple doctors including pediatric ID and GI Specialists, so there may be some info within her posts that could be of value to you. Hopefully that test comes back negative!

OCmama
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby OCmama » Sat Dec 09, 2017 8:05 pm

Hi Max! Please let me know how her test comes back, I hope she is feeling better!!

Also your specialist said the exact same thing that our Ped ID and Ped GI decided on. Only treat pediatric cases if they are severe, otherwise let it pass. Praying she doesn’t have it! Hope you all are well.

maxny2
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby maxny2 » Sun Dec 10, 2017 12:55 pm

I read many old posts when I battled CDI in 2016 (I got locked out of my old account here). The stories of families/children are heartbreaking.

My primaries and ER docs in an Oregon college town were mostly awful on C Diff. Yes, the usual c diff ignorance. Wanted to continue me on metro/flagyl a third week, when i was still going every hour and sick as a dog. Only an urgent care nurse practitioner who wrote me vanco and the ID doc in Portland who gave me a 4 months tapered pulse regimen, were well-versed.

Here in NYC metro, there is a bigger selection of excellent doctors and specialists. I found a pediatric practice here in Westchester County, three docs, with 6 Harvard/Yale/Stanford/Columbia degrees & residencies between them, and picked the youngest one for Rachel, probably more experience with the epidemic.

Anyway every time I think Rachel is getting better, the D comes back. Hoping for the best. Should have test results sometime next week.

denizz
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Re: Post C-Diff, Family thinking I'm paranoid...

Postby denizz » Mon Dec 11, 2017 12:17 am

hi
so sorry ur little one is going through this but i am more sorry for you bcs i know u are over worried for her ..Well my son had cdiff due to antibiotic when he was 2 years 7 months old and i red and searched many things about ped cdiff ..they refuse to test one year and youngers for cdiff bcs clostridium.bacteria can not cause infection at that period of time bcs of an unmatured gut ... age between 1 and 3(some say age 2 ) if there is no other reason ( they have to search everything stomach bug celiac ibd ibs chrons allergy anythinv that may cause dierriah and if can not find the reason than it may be possible cdiff but still may be ??? age 3 ( some say age 2 ) and older yes it is possible cdiff ..And if it is mild they generally do not treat ( in our case it was treated by mistake and result was not good if i only knew back than i would never use flagly for such a mild cdifd case :( ...And testing is another issue ..pcr test only shows bacteria is present... can not tell if he is having active infevtion ..only EIA toxin test can show that there are toxins at stool but that test is not sensitive and ppl end up many false negatives ..thays why doctor plays the biggest role at cdi ...pcr positive EIA toxin test positive symptom.positive is a cdi ..even if one of above is negative make.them.search some more before starting a treatment and i am.hoping ur case is a stomach bug ...good luck ..Deniz


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