Infantreflux.org | C-Diff...still......

This topic has 16 replies, 1 voice, and was last updated 16 years, 3 months ago by Anonymous.

Viewing 15 posts - 1 through 15 (of 17 total)

1 2 →

Author

Posts
July 9, 2008 at 3:18 pm #53608

Anonymous
Inactive

I don’t understand. As soon as I started my son on the probiotic, he stopped having diarrhea, in fact he got really constipated. No mucous since then either…..so why did his C-diff test come back positive today?! And are the painful spells he is having stomach cramps from the C-Diff rather then a under-developed GI tract?! I seriously don’t know how much longer I can deal with this…I feel the physical need to throw up because I am so emotionally upset. I don’t know what else to do and none of the docs seem to have any answers.

BTW…My goal is to make every thread on this page started by me…I’m doing well so far.

July 9, 2008 at 3:39 pm #53610

hellbennt
Keymaster

Oh chris, I have no idea. is there a specialist in this somewhere in the world whom you can contact? maybe start with dr philips? (he’s not a medical doctor but he is dr of pharmacology & maybe there’s someone out there researching this???) Would dr. putnum be any help? he specialzes in eos cells, etc, so I truly don’t know…

July 9, 2008 at 8:24 pm #53637

Anonymous
Inactive

Goodness sakes. Chris you have been through the ringer lately. I was hoping things were on the up and up… but I have no clue. What all is he taking meds formula foods etc… my dh is the same type of dr the dr phillips is and I can ask him some questions just need some detailed information and he may be able to help some. Just PM me if you don’t want to rehash everything in “public” again. My heart is breaking for you b/c I know you were so hopeful with the probiotics and all.

July 9, 2008 at 8:26 pm #53638

Anonymous
Inactive

Oh, I’m sorry to hear this.

Have they been able to culture the C. diff and do susceptibility testing to know what antibiotics are effective against it? Or are they just doing the C. diff toxin assays?

Also, I know you are using the Klaire Infant probiotics (which are GREAT) but have you also tried S. boulardii? I’ve read that it can also be very useful in treating C. diff.

July 9, 2008 at 10:59 pm #53649

Anonymous
Inactive

I am SO sorry to hear this!! I was also going to suggest another type of healthy bacteria.

I did some googling and apparently the Univ. of Chicago hospital has experts when it comes to treating C-diff. Maybe you could email the director of Infectious diseases using their search engine?

HUGS to you! I cannot imagine the stress of this! Ugh!

July 9, 2008 at 11:06 pm #53650

Anonymous
Inactive

Oh man. I have no c-diff help sorry. But I am sending you a great BIG internet hug. I am praying that you guys can find your answer SOON.

July 11, 2008 at 3:53 pm #53754

Anonymous
Inactive

I love you ALL!!

Yes, I have just started giving him the Florastor. And thank you for the info on the U of Chicago. You better believe I will be bugging them until I get some answers!

Beth….I would love any help your doc could give. Here is the skinny…..Tre started at birth on breast milk and milk-based formula combined. We believe he had diarrhea caused by MSPI for weeks until we got to the Neocate. During this time he was cranky and it was obvious it was because of silent reflux. We started treating the reflux first within Zantac and then Prevacid. By the time we got the food issue taken care of, the C-Diff that he was obviously exposed to, had a chance to take over. We have done 5 rounds of Flagyl…3 days, 7 days, 10 days, 10 days, 10 days. Each time 25mg 3xs a day. the first several times, his stools would go to normal within 2 days of starting the meds, but within 3 days after stopping, they would go right back to diarrhea and mucous. The last 2 times, the diarrhea stopped, but the mucous continued. My GI believes he has developed a tolerance to the Flagyl. They did a scope and found no damage to his colon. The GI only wants to use the Vanc as a last ditch effort so I started a pro-biotic and took him off the reflux meds just in case they did influence his bodies ability to fight off the infection. His stool changed drastically overnight! He got constipated! He started growing really well and I didn’t see any diarrhea or mucous in 2 weeks. The GI ordered the stool test just make sure and was shocked when it came back positive. As of now, he is on no meds and is drinking Neocate. I am 99 % sure if we could kick the C-Diff…he would be a very happy little MSPI baby that deals with constipation (my other 2 are this way too…it’s kind of our MO). Did I forget anything?

Thank you all again!

July 11, 2008 at 5:57 pm #53763

Anonymous
Inactive

Chris

What is his weight and how old is he, I can’t remember. DH is looking up stuff for me from work… he is working all weekend:( But I will help as much as possible.

July 11, 2008 at 8:25 pm #53765

Anonymous
Inactive

Oh and talking with dh more he had 2 concerns:

1- possibly the flagyl dose wasn’t high enough

2- After 5 tries then he would say vanc is the way to go but make sure they give you a good dose.

I HTH some.

July 11, 2008 at 11:19 pm #53767

Anonymous
Inactive

I agree with Beth – if 5 rounds of Flagyl didn’t eliminate it then it could be a resistant strain. Vancomycin would likely be the way to go. How long were the rounds of Flagyl that you did? Also, I would like to see them try to culture the C. diff to do susceptability testing on it. That would really be the ideal thing. Also, glad to hear you’ve started the Florastor (S. boulardii). I really hope it helps!

July 12, 2008 at 10:12 pm #53809

Anonymous
Inactive

Hi. beth, he is 4 1/2 months and weighs 14 lbs. I agree that the rounds of flagyl haven’t been high enough, nor long enough. They have been 3 days, 7 days, 10 days, 10 days, 10days, all at 25 mg 3 X day. That is what I am concerned about with the Vanc as well. Has your husband found anything out about dosing etc? As far as doing the culture goes, isn’t there only really 2 antibiotics that won’t make the situation worse? I’m going to ask about it and push for it anyway.

July 13, 2008 at 12:50 pm #53814

Anonymous
Inactive

Chris I just pm’d you.

July 13, 2008 at 3:55 pm #53828

Anonymous
Inactive

Hi Beth…I tired to send this message last night..but I think the system was having trouble. Tre is 4 months and 14 lbs. I just read your PM….thanks so much. Are these amounts still right taking into account his age and weight?

July 13, 2008 at 4:30 pm #53832

Anonymous
Inactive

Yes Chris. Those numbers did include the age and weight. This way you will know what you should expect for a “good dose” of meds. Good Luck. Sounds like the vanc is probably the right thing to do now.

July 13, 2008 at 10:58 pm #53851

Anonymous
Inactive

Maybe….but here’s the thing….if he wasn’t getting a high enough dose, could that mean that he isn’t resistant, just that he needs more? I would rather give the Flagyl one more try than go directly to the Vanc? Is there anything bad about going that direction and then trying the Vanc if the Flagyl doesn’t work at the right amount?
Author

Posts