As told by her mother.
Riley was diagnosed with C. diff on May 10th of 2017 after having an upper GI test done. To celebrate the good news from the procedure, we went to Yellowstone National Park to camp, but sadly something was wrong with her, and she started to not feel well. I cut our camping trip short when she developed explosive diarrhea and couldn’t hold her bowels.
Doctors ran tests and said I was crazy and that it was a stomach bug. I felt like I was going crazy, but then our Denver doctors had some tests done, and sure enough—it was C. diff. I knew in the back of my mind from hearing reports and having a classmate with it.
Riley started the first round of Vancomycin—ten days—and she recovered normally like the doctor said. Two weeks later, Riley was right back at square one, but worse. Another round of Vancomycin—fourteen days. Things seemed to be getting better, and then boom! Out of nowhere we were looking at six days in the hospital. She couldn’t walk, her tummy pain was so bad that crying hurt her, she wouldn’t eat, she refused to drink, she didn’t pee, she got really pale and lethargic, and she lost a lot of weight.
Round three of Vancomycin (and talks of fecal transplant if this time didn’t do the job). Failed again! “How can this be happening?” I asked the doctor. He consulted with an infectious disease specialist there in Denver and prescribed a prolonged heavy tapering dose combined with heavy probiotics extensive therapy (VSL#3, Florastor 250mg, and kids’ Culturelle) for the gut, along with anti-cramping sublingual tablets.
By August 2017 she started this long process with the notion that a fecal transplant could become a reality. At the end of the first week there was no improvement, but by the middle of week two—big difference—her color came back, she was eating more, she didn’t sleep so much, fewer complaints of pain. By week four—tremendous strides—lower doses began. By October, my Riley was back to her old self, telling me, “Mom, I don’t need that anymore, my tummy’s better, see?” as she showed me her tummy with a grin. But she still had weeks to go on this medicine and therapy.
By mid-November and after hundreds of dollars in medicine paid out of pocket, checkups, stool tests, and losing my job over too many days missed, she was a happy and seemingly healthy kindergartener running on the playground. May was behind us, and the new year around the corner. Christmas came and went, and so did the New Year. In February we moved, and May was somewhat of a memory of a horrible nightmare. But now it’s trying to rear its ugly head again. I can only be proactive and start intensifying the probiotic therapy to try to avoid the chance of C. diff returning.
Tummy pains are coming back, as well as a lack of appetite. She’s a bit lethargic, a bit pale, but still in high spirits she remains. Doctors told us after four rounds of C. diff that her chances are greater than 50% of it plaguing her little body again, and it could be brutal this time around—more so than the last time. But this time I am informed and aware of what may happen and what may have to happen.
If you ask me if I’m emotionally prepared, honestly, my answer is yes and no. Just moving and starting a new school and daycare and me a new career, I fear the worst. Every day she goes to the bathroom and yells, “Mom, I went poop can you come help me?” I dread that smell, and I fear smelling it. My mind races, “Is this the time I’m going to find out it’s back?”
We have a long journey ahead of us, and fighting the nightmare pathogen (as they call it) is a long battle. I have had to explain to her school what it is, what it does, how it affects her and her classmates, and the precautions that need to be taken. Staff and faculty just look at me with blank stares and comment, “Oh poor thing,” with no understanding how serious this really is. It seems to me that the public schools and families within the school districts here in Wyoming have no real insight as to what C. diff is or how serious it really is and can be. There has to be a way for schools to become more informed about and more aware of C. diff.