Thursday, May 29, 2014

Our Pseudomonas Story

I thought prior to giving Charlie's latest throat culture results I'd share our pseudomonas story with everyone! I hear a lot of moms freaking out about this diagnosis in their CFer and I totally did too! So I thought I'd expand on what OUR clinic does for treatment, how it impacted our life, etc.  I'll also try and put some of my microbiology knowledge to use and explain a bit about the bacteria themselves.  Just a warning- this is LONG.

Charlie was diagnosed with staphylococcus aureus at 4 months old (so back in 2010).  This is common and was asymptomatic so it wasn't treated.  Staph aureus is a relatively ubiquitous bacteria that is found on many healthy peoples' skin and in their nasal passages.  Staph aureus is a gram positive coccus that for the most part doesn't cause huge problems in CF patients so we didn't worry too much.  If you wanna know what it looks like growing on a petri dish- you can typically tell a staph bacteria because it grows as very small, tan, symmetrical round colonies.

In October of 2011 when Charlie was a little over a year old we got a call from the head of our CF Clinic- never a good sign, right?  He had called to tell us that Charlie had cultured positive for pseudomonas aeruginosa (yes, there are actually different subtypes of pseudomonas-- 99% of the time people in CF circles are discussing P. aeruginosa however).  P. aeruginosa is a gram negative bacteria that can create a biofilm after long term colonization, thus making it hard for antibiotics to get to them.  On a petri dish it is distinguishable by smell (stinky with slight grape undertones [yes microbiologists smell bacteria like other people smell wine lol]) and large, glossy colonies that are tan with a slightly greenish tinge. In addition, pseudomonas can be either aerobic or anaerobic, meaning it can grow without oxygen.  This means that even if it gets covered in mucus it can still thrive.

Needless to say, I was pretty freaked out.  While pseudo is very common among CF patients, most are a bit older when they colonize it, how did Charlie get it so early?  We very purposely kept Charlie at home with a nanny so he wouldn't pick up all those daycare germs- how could this happen?  Well, it turns out pseudomonas is pretty ubiquitous too.  Does your kid splash in puddles? pseudomonas.  Does your kid play in dirt? pseudomonas. Does your kid ever play outside? pseudomonas.  Does your kid have interaction with other kids? pseudomonas.  Pseudomonas can be found in dirt, water, on skin and in hospitals; like I said, it's everywhere.  Because it's pretty much everywhere I don't even bother restricting Charlie's play outside all that much. 

One note that I will make, though, is that Charlie had started swim classes about a month before his pseudo diagnosis.  It was a humid area and I can say first hand that the pool was disgusting.  Our first class I saw a baby puke in the water and then watched it just disperse in the pool.  EW.  I'm sure it was filled with all sorts of gross puke, pee, snot, and lots of other bugs (the amount of kids that went in that pool each day was staggering).  When he was diagnosed I immediately asked about the pool and was told that there's usually enough chlorine to kill any pseudomonas pretty quickly.  However since then I've read numerous articles about how urine can render chlorine less effective, and I'm sure this pool had plenty of urine in it.  We stopped going to the swim classes after the positive culture because I personally believe that's how he got it, despite what the doctors said.  The timing was too close and the pool was filled with gross things (and the humidity could have aerosolized a lot of it too).  That being said, this is totally anecdotal and also, I am often wrong.

Anyways, the normal course of action for OUR clinic (they all do this differently) is to do a 2 month stint of inhaled Tobramycin, commonly known as TOBI.  Luckily his pseudo showed up to be sensitive to tobramycin (there are strains out there resistant to antibiotics) so we started doing that twice per day.  In addition they also started him on azithromycin- this is an oral antibiotic.  It doesn't directly kill pseudo but it weakens its reproduction so the TOBI has an easier time working.  In addition they changed his classification from CF1 (pseudo-negative) to CF2 (pseudo-positive) so they can schedule all the negative CF patients on different days than the positive ones -- cross contamination worries and all.

Luckily this whole time he was asymptomatic- he gained weight, didn't cough, and acted totally fine.  The TOBI was a pain because it adds 30 minutes or so onto each treatment, bringing our tally to 2 hours of treatments per day.  After 2 months he was checked again and it was found that he was still positive.  This was a huge bummer.  The CF clinic then gave us the option of coming in for a round of IV TOBI.  We immediately thought we had to go, so it was wierd that they even gave us the option.  After discussing it at length we got the impression the doctors didn't think it was a great idea to have him come in, but they were giving us the option if we wanted to.  The reasons they didn't want to start a course of IV antibiotics were:

1. Charlie was asymptomatic
2. Charlie's pseudo still showed as being antibiotic sensitive
3. Charlie was a very high energy 1.5year old and it would have been a struggle with IVs because he was very grabby
4. It was the middle of winter and there were even worse bugs in the hospital than pseudomonas
5. There's no evidence that IV TOBI works any better than a course of inhaled TOBI+Azithromycin

So with those facts in our head, and the alternative being 2 full weeks of inpatient antibiotics (they wouldn't do home IVs because he was so young) that might not even work for a bacteria that wasn't yet causing problems, we decided against the hospital visit.  That was a hard decision, but looking back I'm so so glad we didn't go in. 

So we continued with TOBI, switching to a 28 day on/ 28 day off cycle.  The off-TOBI months are soooooooo nice, you get an hour back in your day!  And less nebulizer pieces to wash too :)  His cultures came up positive after positive from October 2011-May 2013.  Yup, he was positive for THAT long.  But it was never a big deal, he was almost always asymptomatic unless he was sick, which wasn't very often.  And then last May we got a negative throat culture result! We *kind* of celebrated, we were very happy but pretty doubtful.  Charlie was/is at an age where getting throat cultures isn't easy and we don't really trust them all too much unless they say something bad.  For this reason, and the fact that bacteria sometimes hides deep down in the lungs where it can't be cultured, the CF clinic requires one YEAR of negative throat cultures before being considered officially "negative'.

We never thought that would ever happen and just kept plugging away with TOBI.  In the year that followed Charlie was on quite a few antibiotics (levofloxacin, augmentin, bactrim, IV cefeprime, and IV tobi) in addition to inhaled TOBI and azithromycin.  Amazingly, he kept culturing negative!  And this past CF Clinic visit we just got the great news that he has cultured negative for an entire YEAR!  He is officially pseudo negative and back to CF1 status!  We'll find out next week if we can stop the TOBI/azithromycin, but in the meantime we're very happy that it's gone! At least, we think it's gone, it could still be lurking deep down in the very bottom of his lungs, but for now I won't think about that :) 

So there is our [long] pseudo story-- I know it's a really scary occurence and that every child is different, but I hope it gives some mama's out there a little hope that you CAN get rid of it (even if it takes what feels like forever) and living with it can be totally manageable as well. 

FYI- the rest of the clinic went great (aside from Charlie sprinting back and forth in the exam room for 2 hours like a tazmanian devil).  Charlie's weight is right where it should be, 75th percentile for BMI, and his lungs sound clear.  He's the biggest 3.5year old that I know, weighing in at 42.5lbs and 42.5inches tall!

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