Sierra's Case History

Guest · Postby **Guest** » Fri Jan 30, 2004 1:31 am

I wrote up a summary of Sierra's history for a GI specialist we saw this week, so I'll copy and paste here. Sierra was 7 1/2 months old when she started the symptoms in June 2003. ************************************************* The symptoms she experiences with the c difficile each time she goes off medication are increased gas, waking up at night in pain, crying when passing stools, incredible constipation initially with mucous and blood in stools eventually. JUNE 2003 (Treatment 1 – Flagyl) Symptoms came on suddenly. She was fine in the morning, but got progressively worse until I ended up in the Children’s Hospital ER at 3am. She had incredible constipation with a proplapsed rectum and bloody mucous oozing out around the packed stool. Tested POSITIVE for c diff and prescribed the generic equivalent of Flagyl for 10-14 days Fine once on meds. She felt better relatively quickly – within a day or so, however stools continued to have bloody mucous for several days, then finally looked normal. EARLY JULY 2003 (Treatment 2 – Flagyl) She was retested about 7-10 days after finishing the Flagyl and tested POSITIVE for c diff. She didn’t really exhibit any sypmtoms until right about the time we got the positive test result. Went back on Flagyl for 10-14 days. Also started giving her YoBaby organic yogurt each day and continue to do so. Again, fine on meds. LATE JULY 2003 (Trestment 3 – Vancomycin) She was retested again about 7-10 days after finishing the Flagyl. Was just starting to experience symptoms when we retested her. Tested POSITIVE for c diff and switched to Vancomycin, 125 mg 4X day. Again, fine on meds. AUGUST 2003 (Treatment 4 – Vancomycin taper) She began experiencing problems about 7-10 days after finishing the vanco. Tested POSITIVE for c diff and began a Vancomycin taper (which incidently finally cured her sister back in 1994/1995 when she also had a recurring problem with c diff as an infant). Vanco 125 mg 4X/day for 2 weeks, Vanco 125 mg 2X /day for 3 weeks, Vanco 125 mg 1X/day for 3 weeks, Vanco 1X every other day for 3 weeks. Plus 1 week of one dose every 3rd day. Again, fine on meds even at the end of the taper, however I did notice some mucous in stools each time we stepped down the dosage. LATE NOV/EARLY DEC 2003 (Treatment 5 – Vancomycin) Same story – started experiencing problems about 7-10 days after finishing the Vanco taper. Tested POSITIVE for c diff and went back on Vancomycin 125 mg 4X/day. MID DEC 2003 ( Treatment 6 Vancomycin with Culturelle) Saw an Infectious Diseases specialist at Children’s Hospital. He recommended continuing the Vancomycin for a month and to use the Culturelle lactobacillus capsules that I had purchased. Adjusted Vancomycin dose to 150mg 3X/day. Opened 1 Culturelle capsule into formula 1X/day. Fine on meds, but I did seem to notice more mucous in stools than usual during a period of medication. Sierra also seemed to be more gassy and waking up at night. MID JANUARY 2004 (Treatment 7 Vancomycin) Upon completing the month of Vancomycin with Culurelle, she began having symptoms even quicker than usual – very gassy and waking up with lots of crying, even yelping, during the night. (Could this be Vancomycin resistance starting? The Culturelle?) Since I had 2 refills on the Vanco from Dr Leake, I put her back on the Vancomycin. We also stopped taking the Culturelle. PRESENT (Still on treatment 7 Vancomycin) She is doing ok, but still having lots of gas (especially at night) and waking up during the night. ************************************************* I gave the above history to a GI specialist we saw this week at Children's Hospital in San Diego and they decided to admit her to the hospital for a "system flush." It wasn't pleasant - she was poked 5 times in 4 places to get the IV started, then a feeding tube put down her throat so they could administer the "flush out" concoction - a liquid product called "Go Litely." All the nurses commented that "GO Litely" is quite the misnomer. There is nothing litely about the product! Then we waited for all the "output" which came in mass quantities. We went through 24 diapers in 24 hours! The rationale was that the c diff spores could be lurking in pockets within her intestinal tract (especially since she gets very constipated in the early stages of her symptoms) and hopefully, everything will be flushed out with the Go Litely. We returned from the hospital tonight and now start on a vancomycin taper (again) in conjunction with using the Culturelle. I'll post back later once we know what happens when the taper is complete. Janice (Sierra's Mom)

Guest · Postby **Guest** » Wed May 05, 2004 1:30 am

It's now May 2004. In the latter part of March, Sierra had an ear infection (first time) and was given Zithromax. Shortly after this, she began the last phase of the vanco taper - one dose every 3rd day. It seemed to us that she was starting to have some problems - i.e.gassy, waking up at night, discomfort when passing a bowel movement. We had a follow up with the GI scheduled anyway at this time and she added on a couple weeks to the taper and temporarily bumped the dosage back up to daily for a week. In addition, since Sierra would have bouts of constipation which seemed to have an effect on her c diff condition, she felt it was important to keep her bowels moving. The theory being that the constipation could be trapping spores. So we also started giving her a prescription laxative called Miralax. In spite of having yet another ear infection just as we wrapped up the vancomycin, Sierra has been doing well. It's been over two weeks since she's been off the vancomycin and her stool test came back negative for c diff - hooray!! We are continuing to give her Culturelle and VSL3 daily (both probiotics) as well as the Miralax (every 2nd or 3rd day). We are also continuing to delay the introduction of daily products since she had a big problem when we tried milk (even the lactose free milk). She still takes the Prosobee Toddler Next Step formula sometimes as well as soy milk (she loves soy milk and frozen yogurt smoothies!) I am so relieved that this is finally over!! Janice

Sierra's Case History

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