1st Pseudomonas Culture

[CFSanDiego]

Well, my daughter had her first pseudo (non-mucoid) culture, after 6 weeks of colds and chronic ear infections. Hence, it is probably in her upper airways per doctor.

Friday she got tubes in her ears. Sunday her throat culture came back so........

We are starting 3 weeks of cipro and tobi alternating on and off for 3 months. I need a little hope here, so...

1.) Does anyone have any positive erradication stories?
2.) Did anyone culture this young, not erradicate, and kept fairly healthy? Her fev1 at last week's clinic visit was 115%.
Thanks,
Edan.

 

[bigstar]

I have a similar story. I was first diagnosed with PA when i was 7. Im not sure if they had nebs back in 1996. They gave me a round of IVs for 2 weeks. I never cultured it again until 2003. I have it since then but as hard as it seems to you now, it is manageable. It is not the end of the world! Im 23 now and my PFTS are normally aroung 80 but they easily drop to 60. If i was courageous enough to do IVs a little more often (i dread them) i would be in an excellent shape. Be brave. Be very brave and strong! We are soon entering a new era of drugs! This gives me hope every time!

 

[mysticrose]

My son first cultured it when he was 6 months. We did one round of Cipro and Tobi. He is now 10 and hasn't cultured it since and his PFTs are usally over 110%.

Jen mom to 4 kiddos. 3w/cf and 1 lucky red head.

 

[JennyCoulon]

My 7 year old cultured it this time of year about 2 years ago. We did the Tobi and an oral antibotic for 2 weeks and he still cultured it. We ended up having to go on IV antibotics for 2 weeks and he hasnt cultured it since. With the IV's he was only admitted for 2 days while they got the dose set and then we were able to finish it at home. ***knock on wood*** but my oldest who is 13 has never cultured pseudo. Good luck

 

[Ratatosk]

DS first cultured it when he was 3 months old. Started Tobi. And he cultured it off and on for the next couple years. Was always nonmucoid and light. When he was about 4 he developed a cough, so his doctor added oral cipro. Don't believe he's cultured it since.

 

[CFSanDiego]

Thanks everyone. I am so overwhelmed right now. You obviously can relate. Here is hoping this double dose of antibiotics does the trick. She started a cold 2 days ago as well. I sure hope the inhaled tobi can still make it's way through all the gunk.

Happy Holidays,
Edan.

 

[ryry11]

Hey Edan. I have cultured pseudo since just after I was diagnosed at age 2. I haven't had a negative culture for it since. Regardless, my PFTs are still between 95 and 105 when well. My lowest ever was 67 percent when I was extremely ill for a few months last year. I have gotten them up 30 percent since then and my last two hospitalizations they rarely dipped below 85. I am doing extremely well even with pseudo. It will be okay. I also like Cayston, which may be easier for your little one.
<3

 

[CFSanDiego]

Thanks again everyone. Really makes it easier to digest all of this.

 

[2roses]

CFSD, It's good that you are treating the PA aggressively and I hope that the oral antibiotics will do the trick. Great comments from the community about the success of IVs. If the PA is still culturing after the course of antibiotics, I strongly encourage you to push for IV treatment, and one that is long enough to succeed. They can test different classes of drugs on the culture to see what kills it. One thing PA is excellent at is protecting the "colony" as time goes on, making it more and more difficult to eradicate. My daughters have both cultured PA for many years and we can never get rid of it regardless of rounds and rounds of very strong IV meds. Further, they are culturing both rough and mucoid strains of PA that are becoming more resistant to drugs. As a result, we are looking at a dwindling arsenal of drugs that are effective.

My bottom line advice is to go momma/papa grizzly and do whatever it takes to really get rid of PA now, being as aggressive as it takes.

 

[2roses]

CFSD, forgot to recommend sinus rinses if you are thinking the PA is hanging out in the upper resp. Sinuses can harbor infections and then they end up in the lungs. The NeilMed sinus rinse bottles are awesome and a 7yo should have no problem doing them.

Best!