Does anyone have experience with cdif in an infant? I don't want to write out the whole poop saga here but this is hell. HELL!!!!
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No one?
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@anonysquire: no experience, sorry but hopefully someone else will chime in
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I'm a NICU nurse so yes, we've seen C. Diff in babies. Has he had antibiotics recently or been in a hospital etc? You should take him to the doctor for a stool sample. Keep him well hydrated.
Any specific questions?
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Try here:
http://cdiffdiscuss.org/PHPBB3/Many patients on there have really been through it bad.
If you're able, go for vancomycin over flagyl. There are many less side effects.
Buy these, they are helpful:
http://www.amazon.com/Bleach-Germicidal-Wipes-Unscented-Canister/dp/B01AOGVT40Make sure lo takes this:
http://www.florastor.com/as well as a bacterial probiotic. You could start with culturelle. If IBS symptoms persist after c diff (which in an uncomplicated case, if you avoid dairy products- not sure how old baby is- shouldn't be the case) there is a very potent probiotic called VSL3 that many people have luck with. Not sure if babies can have it though, definitely see a dr. There's also biok but I'm not sure if there's a kids version.
Use gloves, wash your hands like crazy, and be very very very careful about antibiotics in the future, for everyone in your family who might be carriers now. Also I recommend following up with a GI doctor or an infectious disease doctor, particularly if relapses are involved or there is an excessive amount of weight loss. Regular doctors don't know a ton about it.
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And hugs. It really is HELL.
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He had a couple round of antibiotics in the fall when symptoms started and then a couple more in janurary. His symptoms started in September but they wouldn't test til I practically begged in janurary. And positive for cdif. He was on flagyl already for 2 weeks and it did nothing, actually he seems worse. I've been taking regular samples and his stool ranges from yellow mucus to all digested blood. His ped wasn't doing enough so I took him to the ER last week and they ran some more tests and set us up with a GI specialist.
Just not really sure how long I'm supposed to wait? The GI doc can't see us for a couple weeks, pirate is anemic because of all this crap. And he doesn't sleep, he toots all night and I can tell his stomach is really bugging him. He is almost 1, and doesn't do dairy. And I don't either.
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@anonysquire: oh no! I would see if you can get a Rx for Vancomycin and I would also start him on a high quality probiotic. Good luck!!
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@QBbride: oh ya, I should add that he's been taking probiotics as well!! Thank you for your help! I just want him better
he was diagnosed with colic at 2 weeks and hasn't stopped screaming since haha. I'm starting to think it never was colic and maybe has always been some sort of gut issue.
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@anonysquire: The ER didn't start him on vancomycin? Omg, I would think at this point he would be hospitalized. I don't mean to make you panic, because you're already going to see a GI doctor, but this is serious.. depending how dehydrated he's getting and how bad the infection is, he could honestly eventually die. And yeah I bet his stomach must hurt a lot. I will be absolutely shocked if he doesn't suffer from post infectious IBS for awhile- between several months and a couple years, even. Low fiber, foods that don't cause gas. Rice and chicken kind of food. Did you explain this to the GI? Is there an infectious disease doctor near you? When was the flagyl? Some people take a little while to recover *from* the flagyl but if the blood and mucous is still there and that weird smell he still has c diff. If the vanco doesn't work there is also dificid which does help some percent of people that were not helped by vanco. But if vanco doesn't work, most likely I think you're looking at a fecal transplant, which sounds gross but has a really good rate of success and can be done by enema if colonoscopy can't be done since lo is so little. Also, when getting the prescription ask about a taper and/or pulse.
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@anonysquire: oh no! That is so sad. Poor guy. And poor mama!! That's good you're going to see a GI specialist. That's good you're off dairy. How about other things like soy?
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Sorry for the 2874329857230498230479 questions. I just can't believe doctors are making you wait after he's had it this long. A lot of doctors act as though it's just a quick fix with the flagyl and it can be much more resistant. I just feel so bad for you guys!!!
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Tomorrow is finally the day of the elusive appt. holy crap (literally!) we've waited so long for this!!! Will update tomorrow. As for now, Pi is still having all the same symptoms, still losing weight and is grumpy most times of the day. That and poops all day.
But how cute is he?
Edited to add: this thread is about poop but the picture is chocolate pudding. Really bad choice of pic!! -
So cute, pudding face! I can't believe you waited 3 months for this appt. hope you get some answers.
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@macintosh: not by choice!! This was the soonest opening they had when I originally called !
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Well turns out what the pediatrician, instacare doctors and ER doctors told us was cdif is something else. This stomach doc said he would bet money that it is crohns or ulcerative colitis. He sent us to the lab for blood tests and stool samples and we just need to wait on the results.
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@anonysquire: Been following your poop saga, as it were. For real, they were ALL wrong?? Girl.
When are y'all supposed to get the results back?
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@anonysquire: I'm sorry to hear that - we have both crohns and colitis in our family (although none diagnosed in kids). Wall me if you have any questions...
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@anonysquire: oh no, that must he so frustrating. Poor little man. I hope they get him on a treatment plan soon.
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@magnoliamama42: well according to the doc today, he could actually have cdif but it doesn't cause diarrhea in infants. Something about toxins. So there is a different reason for the diarrhea. In 72 hours!!
@tinyperson: thank you!
@macintosh: I hope so too! I just want him to be happy and not in pain!!
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Wondering if it could be another food allergy or sensitivity. My little guy has had a lot of diarrhea, bloody stool at times and tons of gas and stomach pain and it is colitis due to not only milk protein allergy but some other unknown protein allergy that we haven't been able to pinpoint. (Basically Fpies)
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Wow I've never heard of colitis or crohns in such a young guy. Poor thing and poor mom. Glad you guys are finally getting answers. @anonysquire:
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@anonysquire: I don't know if they mentioned it but you might check into the Eosinophilic disorders too and see if any of the symptoms match up. We battles this when trying ot get my daughter diagnosed for months, eventually she was diagnosed with Eosinophilic Esophagitis and it was hell, I'm here if you need me.
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@anonysquire: Well, you waited 3 months. What's 3 more days, right?
Crossed fingers that these labs will show something more definitive and he can start feeling better soon!
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So the day we turned in the stool sample I called back 6 hours later to see if they had the results and they said "what sample?". They lost the sample!!!!! So we turned in another sample, and all weekend they gave us the runaround and then yesterday said they accidentally diluted their sample too much for the calprotectin test. So infuriating. I can't believe they are being this careless. Anyways, so far the blood work is all out of whack and he is positive for ecoli but not a strain causing toxins. So we wait. And poop more.
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I'm sorry. your poor baby
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Poor guy.... That is so maddening that they are screwing up.
Did they test for celiac too?
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@anonysquire: I'm sorry.
fwiw our GI said it can cause diarrhea in older babies, not under 6m though. I guess it's not a black and white kinda thing. I hope you have answers and treatment very very VERY soon!
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@hellobeeboston: they did test for celiac in janurary and it was negative.
Thanks for the support! It's just blowing my mind that we might have to send in a 3rd sample. Meanwhile he lost another half pound this week. Ugh!
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@anonysquire: I'm sorry. So frustrating. I hope they figure it out soon.
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@anonysquire: oh my gosh I am so sorry! How infuriating that they are being so careless while your poor baby boy suffers. Hoping for some answers soon
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Following along. I'm so sorry you're dealing both with his not feeling well and also this circus of a practice. I hope you get answers soon.
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@anonysquire: Your profile picture is so appropriate right now. That's what my face would look like after I got off the phone with them telling me that we'd have to send in a third sample!! While my baby was still losing weight and sick!!! GIRL!
he was diagnosed with colic at 2 weeks and hasn't stopped screaming since haha. I'm starting to think it never was colic and maybe has always been some sort of gut issue.
Crossed fingers that these labs will show something more definitive and he can start feeling better soon!
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