My daughter was five when diagnosed with c diff this last May, she was in such a distraught emotional mess over not able to hold her bowel movements, I almost lost her to it at the fear if it coming back for the fifth time plagues me everyone she says her tummy hurts or her has smells a bit weird. It cost us my job, our home, our lives, her whole fifth year summer, an to this day she suffers from the existing/ lasting side affects/ or reminders from this disease. I read every time it’s contracted the rate of re-occurence goes up by 20% everyone time, if that the case then my Riley has a 60% chance of it coming back worse again. Only five months out from treatment she struggles daily to eat, manage her little body, she is weak all the time, tired, in pain with her tummy, scared, confused, anxiety ridden… I can’t help but think with all she had gone thru what will happen this next if it comes back- will it take her, or will she survive? The struggle is real for us- with no family or friends, no social support network I’m all she has an she’s all I have. Schools need to educate thier parents, children need to be educated, it’s very scary.
By: Peggy Lillis Foundation
Written by Angela Kelly
In a recent article in Parents magazine, there is a chilling story of a mother’s fight to save her 22-month old daughter from a relapsing C. diff infection. This brave account serves as a much-needed window into the epidemic sweeping our country.
A year and a half ago I wouldn’t have given much thought to the article, I had never heard of C. diff and would have considered it as far off a threat as smallpox or Ebola. But that is not the case; C. diff is not only present in hospitals but is also spreading in our communities. Community-acquired C. diff infections are on the rise , and according to the CDC, 17,000 of the 453,000 reported C. diff infections occur in children. Another worrying trend is the rate of relapsing C. diff infections—those have grown by almost 200% from 2001 to 2012 .
So why did Parents Magazine make me cry and post the article on Instagram? Because I’ve been there, fighting for half a year to save my daughter’s life from an unseen tormenter that kept returning despite our doctor’s best efforts.
At first, at the beginning of my family’s battle, I thought we were alone. But once I started talking about C. diff, the floodgates opened, and I learned that it was affecting people all around me. My friends and neighbors have battled this horrific disease for months—even years—with some losing their lives. I found that a neighbor’s daughter who we knew from school had spent a month in the children’s hospital battling C. diff, only to have it re-appear a couple of weeks after returning home. I leaned on her mother for support and guidance texting her late into the night when I couldn’t see an end to the siege.
Almost a year later I stood and watched my daughter, now four, playing with her fellow pint-sized C. diff survivor at the park that separates our homes. They laughed and ran after each other in the California sunshine, with no idea that they both had fought a vicious disease that nearly took their lives. And while I was profoundly grateful that our girls were healthy and happy; I was also angry. Angry that our daughters had lost so much precious time, and that hardly anyone seems to be talking about it.
C. diff IS scary. C. diff IS expensive (costing the US an estimated 5 billion dollars per year) . C. diff IS gross and dehumanizing. But we can’t pretend that it is something that only lurks in hospitals and nursing homes; C. diff is a real threat that is affecting even the youngest people in our communities. So, let’s talk about C. diff; we need to talk about it for the sake of our children.
Read more from Angela at www.gutsymother.com.
Sounds like this story was written about my 8 year old. He was Dx with this.
First off, pediatrician may need to know signs and symptom of C. Diff. My son aquired Cdiff due to a round of antibiotics for tonsilitis. When he began having stomach issues, the Pediatrician brushed it off as a viral infection. A week after, different Pediatrician (same practice) also brushed it off as a viral infection and informed us that it can last up to 2-3 weeks- no meds or labs. Third time (month has passed and an ER visit which discharged him in an hour for “stomach bug”) labs were done for H. Pilori- negative. My son could not walk, hard to arouse and looked like a zombie. His belly was distended and hard as a board. I then pleaded with another Pediatrician to check on my son. He looked at him, checked belly and asked the correct questions “how smelly is his bowel movements and what color?”. He then proceeded to call ambulance transport immediately to admit him to PICU. He was not waking up during this time. This was 1 month or more with this illness.
He was in PICU with TPN (PICC line) with 2 antibiotics- Vanco and Flagyl. He was on albumin and Dr.s (all) have stated they have Never seen a case this bad. My son was in the hospital for 2 weeks; discharged him with more Vanco. After the treatment, approx 4 days, he began with same symptoms. This time, Vanco was given for 2 more weeks. After the third treatment, we are back, 4 days later, he relapsed again. The Infectious Disease Physician comments everytime, “Again, how weird, it is just to weird”, almost as if we are purposely causing it.
I read the above comment and was in shock on how much of a percentage it increases for them to relapse.