Vanco not working - Toddler

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Whammy
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Vanco not working - Toddler

Postby Whammy » Wed Jul 06, 2016 8:37 am

Good Morning,

I've been visiting the site off and on for the past six weeks as my 16 month old battles a C-Diff infection acquired I assume by prolonged antibiotic usage. When he was first diagnosed, his pediatrician put him on Vanco 125 twice a day. We were prescribed Vanco in pill form, which had to be cut open, crushed and administered diluted and in a bottle. This went on for a few days with no improvement. His pediatrician then bumped him up to 125 three times a day with better results. His initial treatment was to last 14 days, in that time we scheduled an appointment with an infectious disease doctor. Once he was finished with the initial 14 day treatment, his BM's slowed down, and eventually settled to one or two a day, for approximately three days after his last dose. In that time we did meet with the infectious disease doctor, and he told us if his diarrhea cam back we'd start a new cycle. The next day (now roughly 3 days after his last dose of Vanco) he had multiple loose stools. We started Vanco 125 four times a day for 14 days. The end of the 14 days came with no real relief, still having five to six loose stools a day, so the infectious disease doctor switched from pill form to liquid form. The compound pharmacist mixed what I think was the IV form of Vanco and we've been giving that to him orally four times a day for the past five days. His stools are still pretty loose, but they have been a little less often. Not for example, he doesn't have a blow-out right after he eats a meal. We are currently calling a GI doctor as recommended by the infectious disease doctor.

Just curious if anyone else has had this kind of resistance to Vanco?

Also,
We switched from Florastor 250mg twice a day to Culturelle twice a day to see if the probiotics may have been giving him any problems. We did this the day before he was able to keep his food in longer, so we're not sure if that may have been causing some loose stools or not.

NanciT
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Re: Vanco not working - Toddler

Postby NanciT » Wed Jul 06, 2016 1:23 pm

Hello Wammy and welcome to the site, please read the first thread for all new posters

So sorry you had to find us and for your little one!! As I read through your post my thought was, you really need a GI or ID or both. It sounds like you are heading in that direction and that would be my advice. We have had several children with CDIFF whose parents were on this site. Hopefully they may check in and see the word "Toddler" in your post.
As for the Vanco, many are on it for a long time. I was on a 3 month taper/pulse dose. The GI is your best bet, many get Post IBS after CDIFF and since he is not having watery diarrhea it's a question if he still has active CDIFF. Talk with the GI about this.
Hope you get the appt and he feels better soon
NanciT

Ril
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Re: Vanco not working - Toddler

Postby Ril » Wed Jul 06, 2016 1:32 pm

Good morning Whammy. I see that you have not yet been welcomed to the site. Please read the first thread on the home page "Rules of Posting" and you can also find a lot of information in the CDI section.
I am sorry that your child is struggling with this illness. I can only imagine as a parent how difficult it must be. It is good to see that you are already seeing an ID dr and will be consulting a GI dr as well. It is important that you see experts.
I have had no experience with a child with c diff but several people on this sire have and will hopefully chime in here plus you can use the search bar and look for related posts and/or send pm's to those people with children.

Best of luck to you and your child.
Rita

Lisa33
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Re: Vanco not working - Toddler

Postby Lisa33 » Wed Jul 06, 2016 3:56 pm

Hello Whammy - Another welcome to the site. I am so sorry that your little one is dealing with this awful illness. As a mom, I know how hard this is on you. We never want to see our kids suffer in any way. It's so hard to know for sure if this is just PI-IBS as Nancy said or if the little one is still fighting off the illness. The rule of thumb that we go by is if you are having more than 3 watery D's per day with the urgency to go, it very well could be a relapse or active c-diff. It's very hard to tell with a baby though as watery D and loose D can both create messes. I think the frequency is a good indicator for a baby as well. Hopefully the GI doctor in tandem with the ID doctor will be able to help you figure things out.

Hopefully the little one will improve day by day and cured of this illness once and for all soon!
Lisa

amyc
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Re: Vanco not working - Toddler

Postby amyc » Wed Jul 06, 2016 4:34 pm

I couldn't take florastor at all, so I could see it causing problems for a toddler. It gave me massive gas and looser stools. Hopefully the switch to culturelle will lead to continued improvement. Has the ID ordered another C diff test? I don't believe there have been any reported cases of true C diff resistance to vancomycin yet, but if his infection is truly resistant to vanco his test would be positive.

The only way to distinguish between post infectious IBS and a relapse is to run a test. If he develops D again after he finishes treatment I would request that he be tested before starting another course of meds. I do wish you guys the best of luck and hope he feels better soon!

beth22
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Re: Vanco not working - Toddler

Postby beth22 » Wed Jul 06, 2016 4:57 pm

I could not tolerate either Florastor or Culturelle. Maybe you should stop all the probiotics for a day or two to see if there is improvement. I also could tolerate no dairy whatsoever with c diff. Has he been tested for gluten intolerance/celiac disease or have any other stool tests been done for other pathogens or parasites? It is possible that he can't tolerate certain foods. Gluten comes to mind, but dairy is another one.

Whammy
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Re: Vanco not working - Toddler

Postby Whammy » Wed Jul 06, 2016 6:44 pm

Thanks for all of the replies.

He may have a milk protein sensitivity. We were in the process of trying different "milks" because he was having a hard time adjusting to cow milk. Him and his older brother both had to use Alimentum do to that sensitivity. His older brother grew out of it around 18 months, so we were assuming the same for our youngest. Unfortunatly he got cdiff in the middle of us trying to see if he outgrew that stage. We are also giving him yogurt which may or may not also be causing diarrhea.
I think that js the next thing were going to eliminate.

He still has watery diarrhea, just not as much as before. At one point he was having 15-20 a day. Currently its around six. Weve gone through roughly 400 disposable gloves, 18-6 oz containers of Calmoseptine, countless containers of Pedialyte and gallons of bleach in the past six weeks.

We have an appointment with the GI either tomorrow or Friday. So hopefully we will have some answers soon.

roy
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Re: Vanco not working - Toddler

Postby roy » Wed Jul 06, 2016 6:56 pm

Are you seeing a paediatric GI?
So far no one has mentioned the fact that a lot of toddlers carry c.diff as part of their normal flora and it does not cause a disease.
They rid themselves of it by 2yo.
In fact more carry it than don't and they will all test positive.
A good ped GI will know this and might investigate further if c.diff meds do not seem to help.

Whammy
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Re: Vanco not working - Toddler

Postby Whammy » Wed Jul 06, 2016 7:07 pm

roy wrote:
> Are you seeing a paediatric GI?
> So far no one has mentioned the fact that a lot of toddlers carry c.diff as
> part of their normal flora and it does not cause a disease.
> They rid themselves of it by 2yo.
> In fact more carry it than don't and they will all test positive.
> A good ped GI will know this and might investigate further if c.diff meds
> do not seem to help.

Yes, the GI is a pediatric doctor. The infectious disease doctor is also pediatric.

I have read that a lot of little ones carry cdiff. Lime you said, hopefully the GI can dig into that a little further. We didnt have any symptoms until after he was one a wide array of antibiotics. He had an ear infection that was followed by a 104 fever (while on antibiotics) switched to another one for tonsilitis, which is speculated why he spiked a 104 fever, but i assumed that was the start of the c diff. we then took him to the hospital for a chest xray to rule out pneumonia. That came back inconclusive. Then the diarrhea started and a c diff test turned up positive.

beth22
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Re: Vanco not working - Toddler

Postby beth22 » Wed Jul 06, 2016 7:10 pm

When my daughter was little, she had to have soy formula due to a milk intolerance, but gradually we added the regular formula back in and she later outgrew it until her teenage years. However, when she was about 18 months old, I remember she took antibiotics for something and was not able to tolerate the non-soy stuff for a while. Maybe taking the vanco for the c diff did the same thing to your son's system. It is something to address with the GI during your visit.

amyc
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Re: Vanco not working - Toddler

Postby amyc » Wed Jul 06, 2016 7:49 pm

After raising two kids I have learned to believe Dr. Mom :). I just had an experience with my 19 year old in an ER where the doctor didn't think a test I wanted done was necessary, I insisted, and he came back an hour later and said exactly that--"score another one for Dr Mom." The condition involves kidney function, so it's scary that they were just going to send him home. Anyway,...

So sorry you guys are dealing with this. The reduction in diarrhea is at least improvement. There are some adults here who have had D while on high doses of vanco, and your son is taking the full sized adult dose, so I really think that could be the culprit. Hopefully the GI will consider tapering the vanco dose down? Since you are seeing pediatric ID and GI doctors I am guessing you live near a large research hospital. i don't think they allow toddlers access to experimental treatments like SER-109, but I would still ask. And I'd ask the GI about VSL#3, which is a multi-strain probiotic. I have no idea if toddlers can take it, but am curious to hear if your doctor thinks it would help repopulate your baby's gut better than a single strain of probiotic.

Whammy
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Re: Vanco not working - Toddler

Postby Whammy » Wed Jul 06, 2016 8:39 pm

amyc wrote:
> After raising two kids I have learned to believe Dr. Mom :). I just had an experience
> with my 19 year old in an ER where the doctor didn't think a test I wanted done
> was necessary, I insisted, and he came back an hour later and said exactly that--"score
> another one for Dr Mom." The condition involves kidney function, so it's scary
> that they were just going to send him home. Anyway,...
>
> So sorry you guys are dealing with this. The reduction in diarrhea is at least improvement.
> There are some adults here who have had D while on high doses of vanco, and your
> son is taking the full sized adult dose, so I really think that could be the culprit.
> Hopefully the GI will consider tapering the vanco dose down? Since you are seeing
> pediatric ID and GI doctors I am guessing you live near a large research hospital.
> i don't think they allow toddlers access to experimental treatments like SER-109,
> but I would still ask. And I'd ask the GI about VSL#3, which is a multi-strain probiotic.
> I have no idea if toddlers can take it, but am curious to hear if your doctor thinks
> it would help repopulate your baby's gut better than a single strain of probiotic.

We live in Pennsylvania near Penn State Hershey which is where we have been going.

The original plan was to fo 125x4 then taper to 125x2 then 125x1 then pulse, but his bms never firmed up enough to move past the 4 times a day.

Ill ask about the vsl3, see if it would be a good option.

Thanks!

beth22
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Re: Vanco not working - Toddler

Postby beth22 » Wed Jul 06, 2016 9:22 pm

I take VSL#3. It is pretty strong and has multi-strains. I'm not sure they have a pediatric version. Some of the probiotics do. I'm sure the pediatric GI will know which ones are safe for toddlers. Vanco did give me looser stools, so that could also be part of the problem.

denizz
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Re: Vanco not working - Toddler

Postby denizz » Thu Jul 07, 2016 2:05 am

hello whammy
how does pedi so sure 18 month is having cdi ???if he is doing pcr test and if it is positive even most researches says age 2 but also many says age 3 toddlers might just carry it ...even AAP says test and consider ages from 1/ 2 as a possible cdiff now new researches are against it ...does your pedi a 100 percent sure there is no other reason ???they deffinetly have to rule out anything possible before they start antibiotic treatment and many doctors fails at this point cause they treat toddlers same as adults ...only studied and found effective probiotic is florastar if it is cdiff infection but also culturella is considered to be effective cdiff infection (no scientific studies yet only small group studies done )(but it is well on antibiotic associated d) ..and i red florastor contains soya in it which is a cross allergen of cow milk so be carefull while using if u have a risk of a cow milk allergy... florastor is saccormyches boulardii ...culturella is LGG ...florastor is yeast but effective at cdiff infections ..LGG is a bacteria and effective at AAD .. please when your son gets fine.keep on informing us ...all mums on here desperate and looking forward to hear succes stories and i am sure your son will be perfectly fine soon ..keep on probiotics ...

getwellsoon
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Re: Vanco not working - Toddler

Postby getwellsoon » Thu Jul 07, 2016 6:49 am

So sorry you are dealing with this with your toddler. You have been given good advice but also would add that Vanco itself causes loose stools. Babies normally have mushier stools than adults anyway. I think you really need to discuss all this with your Dr. but I know for me as an adult, I had mushy stools for months after stopping Vanco. I wish the best for you and your baby and hope this is all behind you soon.
CAROL


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