Part of me sits
in disbelief as I write this post. I
never anticipated writing another post that would need the tag “C Diff.” C diff has been a huge part of our lives for
most of Grant's life (Check out his old posts here if you haven’t seen/read his
story: Our Battle with C Diff, C Diff Update, C Diff Update University of Chicago, and Chicago Take 2) but never did we anticipate having to deal with it with Amelia at
almost the exact age that Grant's 1st case occurred. That's correct... We found out yesterday that
Amelia has a c diff infection.
Let me begin by how this all came about. First and importantly, she has not been on an antibiotic for nearly 6 months (See more below on my theory of how she got it). That's why when her normal 2-4 stools per day changed consistency to mushy sometimes runny or very liquid over a period of a week to week and a half we didn't think much of it. As it persisted (not an increase in the number but again a difference in color, consistency and rancid, sour smell) we figured it was time to make a call to the doctor.
Let me begin by how this all came about. First and importantly, she has not been on an antibiotic for nearly 6 months (See more below on my theory of how she got it). That's why when her normal 2-4 stools per day changed consistency to mushy sometimes runny or very liquid over a period of a week to week and a half we didn't think much of it. As it persisted (not an increase in the number but again a difference in color, consistency and rancid, sour smell) we figured it was time to make a call to the doctor.
After
discussions with the nurse of the doctor on call, we begrudgingly made an
appointment to actually go and be seen.
It seemed very pointless to me.
We unfortunately have seen our fair share of funky poops and know all
too well how to collect stool specimens.
At the appointment, the doctor indicated that the main reason she wanted
to see us was because I had indicated that several of Amelia’s poops had been
grey in coloration and I guess that can mean liver and bilirubin issues. She did an exam to ensure there was no inflammation
or hardness to the liver or yellowing of the eyes (there wasn’t). We talked about various viruses it could be (and
yes even C Diff) and we were sent home with the coveted stool collection kit.
The next morning
(3/26) Amelia obliged and provided a sample for us before daycare. I dropped the kids off, dropped the poop off
and headed to work. From our time with
Grant we know that the lab has a relatively quick turn around time for C Diff and
a couple other results while others can take several days. However, when my phone rang that morning I
still never expected the nurse to say the words “Amelia is positive for C Diff.” I also never expected to have to convince
both the nurse and the doctor that contrary to the doctor’s initial
recommendations of, “We aren’t going to treat Amelia with antibiotics for a C
Diff infection (CDI) at this time because babies under the age of 1 can
naturally colonize C Diff and not have an infection.”
Yes, this is
true! Many babies are born naturally
with C Diff in their guts. That means if
you test a baby under one, many will come back positive for C Diff. When C Diff is not wreaking havoc or causing
symptoms this is simply referred to as C Diff Colonization. However, I had to point out to the nurse who
then had to go back to the doctor that obviously Amelia was indeed symptomatic otherwise we would have NEVER requested a
stool check in the first place! Well,
after the nurse plays middle man and relays the message, the doctor “agreed to
treat Amelia with flagyl 4 times a day for 10 days but will not re-test when
she is done with the meds to confirm a negative result (again because of the colonization). But if Amelia does become symptomatic again
after the meds are complete she will refer us directly to a gastrointestinal specialist.”
At this point, I
was satisfied with this plan because Lord knows we went round and round with
Grant too many times before our old pediatrician finally referred us to a
specialist. In the meantime, we are
giving Amelia her medication and alternating the meds with probiotics (always
good to do because the antibiotics can actually kill the good bacteria in the
probiotics which defeats the purpose). I pray that we have learned
something from our ordeal with Grant and we can kick this the first time. In all reality, his recurrences were not the
norm.
Amelia’s case does not seem nearly as severe as Grant’s 1st case was. His was antibiotic induced and it took us much longer to catch it because we didn’t know what we were looking for or warning signs. For Grant, the doctor kept telling us it was a virus and would run its course. However, when the fever popped up, he was pooping 8-12 times per day, vomiting, and lost 2 lbs we yet again had to insist on a stool culture.
Amelia’s case does not seem nearly as severe as Grant’s 1st case was. His was antibiotic induced and it took us much longer to catch it because we didn’t know what we were looking for or warning signs. For Grant, the doctor kept telling us it was a virus and would run its course. However, when the fever popped up, he was pooping 8-12 times per day, vomiting, and lost 2 lbs we yet again had to insist on a stool culture.
My theory on how Amelia may have gotten C
Diff: So here goes… C Diff is caused by an imbalance
in the natural flora of the gut (normally caused by antibiotics) or via the
fecal oral route often after a stay in a hospital, nursing home or other
communal settings. As I mentioned,
Amelia hasn’t been on an antibiotic for over 6 months. My next investigative move led me to research
how long C Diff bacteria and spores can live on surfaces. It seemed possible although unlikely that now
that Amelia is playing with all the toys Grant played with at the age he had C
Diff that maybe somehow she got it fecal/oral that way. Well, that theory was shot down after finding
that C Diff can live up to 5 months on hard surfaces (Grant hasn’t has C Diff
in a year and half). So with that in
mind and no active or recent infections at daycare, it leads back to an imbalance
in her gut flora. Something recently
caused a shift in her flora and allowed that nasty, naturally occurring C Diff
bacteria to overtake her system and cause the symptoms that under normal
conditions aren’t present.
I am happy to say that at 24 hours on the meds Amelia's poops have already returned to normal consistency and smell. We pray it continues this way and most importantly it continues even after the meds are discontinued in 9 days.
Moral of the story
moms and dads… follow your mommy and daddy intuition! We know our children, we know when something
seems off, and be persistent in what we want for the care of our children.
Thank you everyone for the thoughts and prayers already and please continue to keep us there and we will keep you posted!!!
Love,
The Fishers
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