C Diff Update

I have been trying my best to update everyone on how our appointment went today but also thought a blog update would help to share everything. We received tons of information today and many answers which is a step in the right direction. 

First off, I would like to begin by saying thank you to everyone for their outpouring of thoughts and prayers as we continue to seek answers and find a solution to Grant's ongoing issues with C Diff (see my original C Diff post).  We are incredibly blessed to have such amazing family and friends in our lives.

Matt and I left the appointment today at Children's Hospital feeling reassured and refreshed.  We both agreed that we finally had some answers and it felt great to talk to someone who is extremely knowledgeable about C Diff.  The most reassuring thing to hear while we were there is that the strain of C Diff that Grant has is not a resistant strain (this is becoming much more common).  Dr. Werlin said he knows it isn't resistant because Grant always initially responds to treatment with both Flagyl and Vancomycin.  He did, however, say that Grant's strain is extremely stubborn.  For some reason we are still having a difficult time ridding his body of all of the spores.  Unfortunately, the medication kills the bacteria but not the spores (basically the bacteria's eggs) being left behind.  Dr. Werlin's protocol for epidsode 4 was 5 days on Vancomycin, 5 days off, and 30 days on with a tapered dose.  As he said in our appointment today "that was supposed to work." 

Well obviously that approach didn't.  He is now suggesting we try a "pulse therapy" involving 30 days on flagyl, 5 days off, 30 days on flagyl, 5 days off, 30 days on flagyl, 5 days off, and finally 30 days on flagyl then off hopefully forever.  Yes, you read that correctly!  Grant will be on and off medication (on more than off) for the next almost 5 months.  In conjunction with the Flagyl, we are supposed to switch brands of probiotics to Florastor which has been clinically proven to help with C Diff.  This raised many questions on our end.  Is this even safe being the first.  Of course he had to give us the "there are risks with any medication" spiel but overall he reassured us that this has been done on many occasions with people of all ages and Grant will be ok.  He encouraged us to still get his hearing tested now and then again when he has completed all the medication so we have a benchmark and reassurance that his hearing hasn't been affected as many antibiotics can do.  And most of all he is hoping these pulses will allow for all spores to hatch and be killed off once and for all. 

When talking about treatment options, I asked about the possibility of doing a fecal transplant.  Fecal transplants have been shown to be more effective on recurring cases of C Diff than continued medication.  They involve taking the stool of a healthy donor (usually a family member), making a slurry solution with saline, filter it and seed the large intestines (usually with a colonoscopy being the preferred and most successful method).  Well, unfortunately they are not yet performing this procedure at Children's hospital.  Dr. Werlin is very excited and pushing for this as soon as possible but it is caught up in various stages of approval.  He said if Grant was a teenager he would send him to Froedert and their GI team and they would do it right away.  However, they would "not touch a 15 month old" over there.  Dr. Werlin did indicate that if this treatment option does not work he hopes they will have a protocol in place at Children's for fecal transplants by then or we will make sure it happens somewhere.  There are options for doing at home fecal infusions (enemas) and he said he would gladly show us every step involved in that so we could do it at home if worse comes to worse but enemas aren't as effective as colonoscopies because they only seed the colon versus the entire large intestines.  I know it all sounds extremely yummy and I can't say we are brave enough to do at home fecal infusions but unfortunately many patients suffering from C Diff are having to resort to this.  Insurance companies are slow to approve the costs associated with fecal transplants because they still consider them experimental and people are desperate and resorting to doing them at home.

So basically this is where we stand...  Questions answered, concerns put somewhat at bay for the time being, and continued praying that we are finally going to be rid of this mess in t-minus 5 months.  Slightly frustrated because if we could do the fecal transplant with an up to 92% success rate this could all be over much sooner.  I know this was long and tons of info and I even left some of the not as important details out.  Again thank you to everyone for being so concerned about our little man and praying we got some answers.

Love,
We three Fishers