Cdiff worse after Vanco

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samo1675
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Cdiff worse after Vanco

Postby samo1675 » Mon Feb 03, 2014 7:39 pm

Hi Everyone,

Just looking for some advice for my 4 year old. She is a kidney transplant recipient but with no central lines or anything. She took some antibiotics for an ear infection and shortly after had some diarrhea but it wasn't too bad. We were on vacation at the time but it did not smell like cdiff or anything (she has had it once before). As soon as we got back, she was much better but suddenly, the diarrhea started again. We tested for cdiff and it was negative. She started an anti diarrhea but there was little improvement. I decided to check her again for cdiff and it came back positive. So we started on Vanco and it is day 3 and she is definitely worse. She was going about 3 times a day, but on Vanco, she is going about 6-10 times. The only improvement I would say, is that the smell is gone. Either that, or I am too used it now :). Anyway, I know that the anti diarrhea was a bad idea, and honestly I will never trust the stupid cdiff test again, but I was wondering if this has happened to anyone else. When should we see improvement on vanco? She has lost about 2 kg which is a LOT for her. Her mood is fine but seriously, when is this vanco going to help?

I am hoping that this extra pooping is helping get the toxins out but am I misguided here? I just feel really horrible that we started her on Imodium and don't want it to cause further problems. Her kidney numbers and hydration are fine and I get them checked regularly. What other possible issues should I look out for that indicate further complications?

Thanks for the help - just looking for other's experience! And Im sorry you guys are experienced!

amyc
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Re: Cdiff worse after Vanco

Postby amyc » Mon Feb 03, 2014 9:33 pm

I would contact her doctor to ask if her vanco dose should possibly be increased? Or perhaps the length of treatment extended since she is on the anti-rejection drugs which depress her immune system. Hopefully she will feel better tomorrow and things will continue to improve from then.

AllisS
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Re: Cdiff worse after Vanco

Postby AllisS » Mon Feb 03, 2014 9:51 pm

STANDARD INTRO LETTER: Welcome to the site. Read the first forum, All Users Read This First, and the subtopic Guidelines for Posting to Our Discussion Boards. (Note limit on posting length.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody’s article and topics in CDI – C. Diff Info – Formerly FAQ, including Tests, Hygiene Tips, and Nutrition. Also read The C. Diff Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 80%) recover with one or two rounds of Flagyl or vancomycin. A small percentage do not. Most people eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. (See FMT Information and Treatments.) Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See CDI – Antibiotics Most Likely to Cause C. Diff/Antibiotic Resistance.) Some people tolerate them; some develop C. diff again. (See Dr. Borody's article.) Don’t take medications for C. diff unless you are tested. (See CDI – Tests.)

For further information, see http://www.peggyfoundation.org/ and several other support groups on Facebook. Also, visit reputable medical sites, such as www.mayoclinic.org and www.webmd.com.

This is a support site, not a medical site. We can’t give you medical advice, but we can tell you what did or did not work for us. No one will understand exactly what you are going through unless they have had this unpredictable disease. The best protection, for you and others, is thorough hand-washing and good overall hygiene.

Although we know how devastating C. diff can be physically, mentally, and financially, this is not a fundraising site. We rarely ban posters unless they are verbally abusive, combative, or insulting; use inappropriate language consistently; or attempt to sell something through the site, in which case we usually issue a warning first.

Again, welcome. Remember, the odds are in your favor.

END OF INTRO LETTER.

samo1675, I don't think I could improve on amyc's advice, though I expect you'll hear from others as well. Best wishes for your daughter's recovery. Please keep us updated on how she's doing.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

samo1675
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Re: Cdiff worse after Vanco

Postby samo1675 » Mon Feb 03, 2014 10:11 pm

Thank you everyone. Great advice! Yes, part of her care involves monthly blood tests to check on the levels of medication in her blood. With cdiff, we do it more often - we can do it up to twice a week, but so far the levels are remaining stable. Her hydration is pretty good too but again, we check that regularly. She is on a 125 mg 4x daily regime of vanco.

So it isn't the worst thing in the world that we gave her some Imodium? Do any of you know what we should look out for in terms of symptoms of more serious issues? she is behaving OK but the amount of weight she has lost, is shocking. If I give her anything more than a bland diet, she starts going way more often and loses more weight. She is starving though - really wants to eat some of her favorites.

Anyway, we don't see other specialties because her case is relatively simple, so all our instructions come from renal and we don't see GI. If things don't improve by day 6, her nephrologist will probably refer us to GI. Although I cant imagine what else they can do when cdiff is positive. But that is a good point about increasing her dose...

Bobbie
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Re: Cdiff worse after Vanco

Postby Bobbie » Mon Feb 03, 2014 10:15 pm

samo,
Don't beat yourself up. You did what you thought was best, and some docs. do say Imodium/Lomotil are OK with C. diff. - but usually when the C. diff. is less active. Concentrate on getting your daughter well. You have a lot to deal with since she is a transplant recipient (but how blessed she received a kidney), but she should do well. My son had C. diff. when he was four and a half and also had other problems. He is now 39 - smokes (is an asthmatic), likes beer, and seems to be doing fine health wise although he never goes to doctors.

One of the most reliable tests for C. diff. is the PCR. See CDI - Tests for C. diff.

Keep us posted.

samo1675
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Re: Cdiff worse after Vanco

Postby samo1675 » Mon Feb 03, 2014 11:49 pm

Thanks. That does make me feel better. Roy, her last bout of cdiff was 18 months ago, probably hospital acquired, during her transplant. Is that considered recent? Also, I checked and it was PCR when they tested for it.

amyc
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Re: Cdiff worse after Vanco

Postby amyc » Tue Feb 04, 2014 12:26 am

Roy's advice is great, and I would want a pediatric GI or infectious diseases doctor in the loop ASAP. I took 125 mg of vanco 4 times a day for 10 days, but I'm middle-aged and weigh about 120 pounds, and my new doctor uses 125 mg 3 times a day for adults, so it would be surprising to hear that this dose is too low for a 7 year old child. Poor little thing must be used to needles, but all of the tests for medicine levels can't be fun.

And yes, if the immodium was going to cause the awful, dangerous toxic megacolon/ileus complication that would have been when she was taking it and before she started vancomycin, so you can at least rest easy about that.

seekingcure
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Re: Cdiff worse after Vanco

Postby seekingcure » Tue Feb 04, 2014 3:08 am

I had looser, more frequent stools when I started on Vanco too. I was on the lower dose for adults of 125 mg. four times a day, even though I weigh 145 pounds. A four-year-old weighs much, much less than this, so I think that it's unlikely this dosage would be too low for her. If anything I might wonder if it could be too much for her, but that's a question for your physician or a pharmacist. They should also be able to tell you whether or not the anti-rejection drugs would have any effect on the Vanco dosage.

Any antibiotic that kills c-diff is going to also concurrently kill some of the good bacteria in the colon. I'm thinking this might be the reason some of us experience more diarrhea, rather than less, once we are on medication. I've never had a doctor tell me that. It's just something I've wondered about.

I was able to take probiotics and these seemed to help with my symptoms. However, probiotic usage is a very individual thing. They help some and they make some have worse symptoms. With your daughter having had a kidney transplant, I would never want you to try any probiotics without direct recommendation from her treating physician. In fact, they might be totally contraindicated in her case. With her immune suppression medications, they likely are. But, I'm wondering if her doctor might ok her to add some yogurt to her diet (if she's not lactose intolerant) or perhaps some kefir, just to try to add back some good bacteria and see if that helps with her symptoms .Be sure to ask her doctor if that's ok, because I have no medical background and especially no experience with transplants. I should also mention that many of us developed sensitivity to milk products during and after treatment for c-diff. so you might try to notice whether she has more problems when she has dairy products. I also found that I did better if I stuck to a relatively simple, bland diet, starting with the BRAT diet(bananas, rice, applesauce and toast) and gradually adding in other easy-to-digest foods like chicken, turkey, baked potatoes, etc.

I agree with the others, if it were my child, I'd want a pediatric GI specialist in on the case as soon as possible, just because he/she probably would have more experience with c-diff, particularly in children.

I wish you and your daughter the best and hope she begins to improve soon. Being a mom is a wonderful, but sometimes difficult job. You have both had more than enough to deal with already. Try to get some rest and take care of yourself too.
Bea

getwellsoon
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Re: Cdiff worse after Vanco

Postby getwellsoon » Tue Feb 04, 2014 7:24 am

I also would get a GI on board now. I would ask if something like Questran or Metamucil is indicated for children. Questran is given with Vanco, you just take it two hrs. after dose so it doesn't bind up the med. Her having that much D and losing weight can't be good. Just something else to consider. Vanco gave me loose stools but not D so its a common side effect. Let us know how she does and what the Dr. says. Carol
CAROL

samo1675
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Re: Cdiff worse after Vanco

Postby samo1675 » Tue Feb 04, 2014 8:39 am

Thanks seekingcure. She is on florastor regularly and I give her extra after a dose of antibiotics. Probiotics are a center specific concern. Some pediatric transplant patients are not on it because doctors don't like it. But those that are not, have recurrent cdiff in my experience.

As c diff is so common amongst these kids, usually GI does not get involved but I think I would feel more comfortable if our doc just called up ID and GI. We have done that before for another issue. I also hate seeing other specialties and introducing new ones in her life. You know what I mean? She has been dealing with this since she was two and I try to keep her life as normal as possible. But of course, sometimes that is not possible.

With regard to dairy - she is allergic to that and gluten. So it is very hard to keep her weight up even on normal days. But yes, we are doing the BRAT diet. She is pretty sick of it! And thanks for the advice on fiber. I was adding benefiber, which has no taste but I didn't know if I should continue or just let the D take it's course. Maybe I will add it back?

Sam

seekingcure
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Re: Cdiff worse after Vanco

Postby seekingcure » Tue Feb 04, 2014 6:32 pm

From what you are saying, it sounds like your nephrologist deals with c-diff in children frequently, perhaps even more than a pediatric GI would. But since she already has an ID and GI on her case, I don't think it would hurt to keep them in the loop also, especially if it makes you feel better to do so. With the food allergies that your daughter has, I can see how it would be very difficult to keep her weight up. Most kids this age are notoriously picky eaters anyway and she can't have many of the "typical" things like Mac & cheese that are mainstays for this age group. My four-year-old grandchild went through a period where she would consume nothing but Mac & cheese and milk. Is there possibly any kind of supplemental drink for children that is like Pediasure, but non-dairy? I don't know, but might be something to look into. Seems like some company should make something like that for the kids that can't have dairy but need extra nutrition and calories.

If the benefiber helps to firm her stools up, I can't see any reason not to resume it, but you should check with her doctor just to make sure. Do as Carol advises and take it as far away from Vanco as possible. When I was on Vanco, I took it every six hours, so I took my probiotics three hours after a dose, which was three hours before the next dose.

Keep us posted.
Bea

beth22
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Re: Cdiff worse after Vanco

Postby beth22 » Wed Feb 05, 2014 2:53 am

I got looser stools on vanco too, but then when my body got used to it, it got better. I'm just wondering if you had her stool tested for anything else - like parasites or another bacteria. When my daughter was a toddler, we too, were on vacation and she came down with an intestinal infection (staph, I think it was) and another time she had campylobacter. I don't know if they can do a stool culture now that she is on vanco, but maybe yes, if the bacteria is not sensitive to vanco. I know for parasites it would not matter. It might be a good idea to just double check if you have not already done so.

AllisS
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Re: Cdiff worse after Vanco

Postby AllisS » Wed Feb 05, 2014 9:59 am

samo1675, why is c. difficile common in this population of kids (assuming you mean kidney-transplant recipients)? Combination of their immunity being low and some problem in hospital setting, e.g., with hygiene? Just wondering if you had further info/thoughts on this.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

samo1675
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Re: Cdiff worse after Vanco

Postby samo1675 » Wed Feb 05, 2014 10:26 am

Roy, I am so sorry to hear about your mother. What a horrible thing to go through.

Yes, unfortunately, it is not just staying in hospitals that give these kids c diff. And here I am referring to kidney transplant recipients. They are more immunosuppressed than other organ transplants, as far as I know. It is over prescription of antibiotics which is the biggest problem. We are very lucky that we have only had it twice and unfortunately, not all the doctors know NOT to prescribe them for everything under the sun. For example, if they are waiting for urine cultures to come back and suspect a UTI they will prescribe antibiotics immediately without waiting for the cultures to come back. I should also have been more vigilant, in this case. But yes, it is a huge problem. I know some kids who get it every single month and it affects their transplant, which is the worst thing.it. When they are immunosuppressed, things are so much more complicated.

If in the hospital setting, it is just a ticking time bomb with them. I do not enter any ER room or hospital room with her unless it has been completely wiped with hospital grade bleach. And because it is only a problem with transplant kids, nurses don't necessarily take all the necessary precautions. They have to be told. Those antibacterial soaps make them lazy!The other problem is the under prescribing of probiotics. Some doctors are completely against this because they are afraid of fungal infections in those with weaker systems. This is not true, as is the case with my daughter and tons of other kids that I know who take Florastor or Culturelle every day. That is slowly changing. Hopefully this will lower rates in the future.

And yes, some action should be taken. Another issue is that a fecal transplant has not been done in any of these patients, so that would be a huge improvement. We are hoping Johns Hopkins is currently in the process of trying this with one of their kids. Thanks for telling me about what you did - I may have the opportunity to do something at our hospital. Will keep you posted.

samo1675
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Re: Cdiff worse after Vanco

Postby samo1675 » Wed Feb 05, 2014 10:30 am

Beth22, yes I never trust the Ova and Parasite test so I got her stool tested three times before we learnt that it was actually c diff. We also tested for all the usual bacterial stuff...salmonella and all the good stuff. It was negative each time. We will do another Ova and Parasite soon. I am constantly collecting stool these days. Oh, the joys of parenting!


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