Toddler with c-diff for over two months

[kjerb]

Hello,

I am new to the group and posted for the first time last week with a question about the reliability of the toxin tests. My 15-month old daughter Aubrey has been suffering from c-diff since May. It was antibiotic induced due to ear infections and a possible case of pneumonia. It was a tough winter here in Minnesota! She has been on two rounds of flagyl and wrapped up a round of vanco two weeks ago. She was on each medication for 10 days/4 times a day. She started having symptoms again a few days off the vano, so we retested per her pediatrician's request. Before joining this group I did not know that we should wait 10-15 days after ending the meds to retest. So, of course, the results came back negative. So, we just submitted another sample on Monday and the results came back positive.

The weird thing is that Aubrey has been doing better over the last three days. She does not have D and actually seems a little constipated. So now I am confused as to what to do. Her pediatrician wants to start another round of Vanco right away. However, I am realizing just how little her doctor knows about c-diff. So, I plan to switch doctor's. The good news is that we have an appointment with an ENT and a Ped GI tomorrow. I am wondering what your thoughts are about treating at this point and if we should wait it out a bit in hopes that the probiotics will make a difference. She is on Florastor (twice daily) and Culturelle (once a day). I also mix in a little Nature's Way Primadolpholis throughout the day. I know there was a similar post from someone who had a toddler dealing with c-diff. She was still testing positive, but not having enough symptoms to treat.

Sorry for the length of this post. I think about this all the time and have so many concerns. I am so grateful for this group. It has empowered me to take matters into my own hands and has given me confidence to be an advocate for my daughter. You should see the list of questions I have for the GI tomorrow! Many thanks to all of you. I wish you all the best.

Kristin and Aubrey

[Bobbie]

kjerb,
Often a body's response to extensive D. is constipation so your daughter might be over the worst of C. diff. However, C. diff. is a complicated disease so best to see the ped. GI & get his "take" on the situation.

Many parents have posted on this site with concerns about their children's C. diff. To my knowledge, they all have recovered -- often more quickly than adults do.

Sometimes probiotics help; sometimes they don't. Appears to be related to the number of good bacteria (bacteriodes) "knocked out" by the antibiotic that contributed to the C. diff. One study indicated that Culturelle is more effective in children than in adults. Small world: my son's former ped. GI (he had C. diff. when he was 4 & again 6 yrs. later) is now a product rep. for Culturelle.

Do ask the ped. your questions. I have a double list -- hand the doc.one & have one myself & go down the list with him/her & write the answers. Helps to remember later!

Good luck with the doc.'s visit - smartl move to get her to a ped. GI.

[Nancy1]

If it were my child and she wasn't having D, I wouldn't put her on vanco again. I think it's best to treat based on symptoms and not on test results. Several folks here tested positive after cdiff, without symptoms, and recovered without more vanco. See what your new doc thinks.

[kjerb]

Thank you very much for the helpful advice. We had a good visit with both the ENT and Ped GI. Aubrey's ears were much worse than we imagined (lots of fluid, hearing loss, etc.), so she is having surgery for tubes on Monday already. The Ped GI was also great. His approach is to treat on symptoms versus positive toxin results. So, we will continue with the probiotic routine for several months. If things get bad again he would like to do a Vanco taper. We have had a good streak for five days now. He agrees this is a good sign, but we also have to keep it real considering this nasty beast. I remain hopeful that things will start looking up. This is all I can do. Take care. You are all strong and will get through this.

Kristin and Aubrey

[Bobbie]

Kristen,
Tubes were a godsend for my son -- who also had C. diff. (at the age of 4 & again 6 years later). They usually only last a year to two (unless they have improved) but might get her over "the hump."

Your docs. sound excellent -- not quick to prescribe antibiotics. For some tips on infections (including ear), see FAQ-Infections. Some peds. now (as I understand it) prescribe antibiotic ear drops instead of oral antibiotics, but if she has that much fluid, hopefully tubes will "do it."

Our best wishes to you & Aubrey.