Educate me about Pseudonomas please

[humphrey711]

Hi All,
My daughter is preparing to go to the hospital next week for a PICC line and IV antibiotics. She is 8 and has never cultures pseudomonas. However, her CT scan shows some infection and blockage deep down in her lungs. While she is getting the PICC she will have a bronchioscope and they will suck out some of the gunk that is way down deep and they will culture it. I will be shocked if it is not growing pseudonamas. This scares me as I have heard that it is really hard to get rid of and always comes back. I feel like her culturing it is the beginning of a very long losing battle.

She will receive antibiotics but what else can we do prevent it from returning for as long as possible?

Thanks!

 

[Rebjane]

It sounds like your CF docs are taking your daughter's issues seriously; by having an admission, PICC and Bronchoscopy. This will help figure out a good treatment plan for your daughter. I guess some advice would be; take a deep breath and try not to make too many assumptions about what may happen(I know easier said than done). My daughter did have a bronchoscope when she was just 2 and I was soo worried. They also were looking for what bugs were causing her respiratory issues and had mentioned Pseudo to us (among other things) but it was not pseudo for us at that time, just her usual bug. They did find alot of inflammation thru her bronchoscopy and started her on Pulmicort nebs and upped her vest to 3x a day. She was treated with a long course of antibiotics.

It sound like you are trying to get to the bottom of things. As far as pseudo, my daughter cultured it once a few years ago and we were able to eradicate by treating it with TOBI and Cipro. It had not shown up since(knock wood). My daughter's PFT's generally are about 98-100% when she is well(she is almost 13 now) so keep your chin up.

 

[humphrey711]

RebJane-Thank you for the reply. I really love our CF team. You post makes me feel so much better. I kind of had the impression that once pseudo arrives it is hard to get rid of and pretty much always comes back. At least I know we can go a few years without seeing it again.

If others are out there with responses I would love to read them.

 

[Ratatosk]

Pseudomonas to us was always the "boogie man" mentioned from the very beginning, that it was pretty much a given for people wcf, but then added "but that's a long way off before you have to deal with it". Unfortunately, ds cultured it before he was 3 months old while I was still on maternity leave and he was pretty much sheltered from daycare, germs, dirt.... It was heart breaking because to it brought home that he really did have CF. suspect he either came home from the NICU with it or picked it up at the clinic -- despite frequent hand washing and sanitizer. Pseudo is one of those bugs that can live in water, in a damp environment for long periods of time. So we were told to avoid swampy, muddy areas, places that had stagnant water or damp. It can be just about anywhere.

DS cultured non-mucoid pseudo off an on for the first 5 years. He was put on inhaled tobramycin (tobi) twice a day every other month. We were told once he had a certain number of clear cultures, he could go off tobi. He never had symptoms, and it was the luck of the draw, sometimes he'd culture it for 6 months, next culture would be clear. When he was in the hospital for a bowel obstruction several years ago, the doctor decided to go a clean out -- iv antibiotics at the same time. Hasn't cultured it since.

If she is culturing it.... What are your choices? They'll find out what antibiotics whatever she's culturing will be best to treat it. She'll probably be put on some sort of inhaled antibiotic. If she's symptomatic, possibly IV abx. I can't remember if azithromycin helps with pseudo. Last time ds cultured it and had a junky cough (exacerbation) we increased cpt/vesting to 4 times a day until the cough was gone and he was put on oral cipro, which cleared up the cough in a day or so.