Here we go--baby cultured pseudomonas

[Mama2Five]

So I received a phone call this morning that our 8 week old cultured pseudomonas (she also pointed out there there was a study awhile back that followed non cf newborns up to 1 years old and some showed pseudomonas as well, so it's possible). From what I understand, this is common in CF. Can anyone elaborate why? Is this type of bacteria also common in non cf folks like me, or my husband and other kids?

She gave us two options-we can culture again, or we can go ahead and start tobi now-which we'd do for 28 days, culture again and continue another 28 day treatment if it was still present. On cff.org, it says that they do not know if Tobi is safe and/or effective in children under 6--so is it common to use this on a new baby?

Here's some questions we asked her--if anyone wants to contribute answers before I hear back from her, I'd totally appreciate it!

What information would a second culture provide that we don't already have?


Does having additional data from a second culture (and adding an additional week before treatment begins) benefit us more than beginning treatment ASAP?


Given how common pseudomona growth is in the environment, are they commonly found in the airways of the general population (non-CF patients), and, if so, what makes their presence in CF patients unique?


Could the bacteria found in the culture be the result of her sister's cold or is this bacteria unique?

 

[Ratatosk]

DS cultured nonmucoid pseudo at 3 months and we started Tobi. Really no issues. Doctor wanted to eradicate it to prevent colonization. We often wondered if he had pseudo in his sinuses, because he really didn't have symptoms. We have yet to get a sputum culture out of him, he doesn't cough up anything, so it's always been throat cultures. We'd been told after two clear cultures, he could discontinue tobi.

When he was 4 he had an exacerbation (junky cough), which required cipro in addition to tobi.

 

[Aboveallislove]

My understanding is it is very rare in non CFers. If it were me, I'd ask to get a second culture now and immediately start after. That way you can assure no lab mistake but not delay treating. Not sure what others think. Most drugs are not tested on those under six and yet are used for our CFers. I stopped reading labels and asked doctor what the risks were and what to watch for because they'll tell us the real concerns. Good luck!

 

[Gammaw]

Treat. Smack it hard now and there's an excellent chance you can get rid of it for a long while - potentially years and years. Our DS cultured it around two years old. We used Tobi and Cipro as I recall until he was clean for a year and then quit. He went free of PA for years and years. If you can get rid of it now, it will potentially save lung function.

 

[cam]

I have cultured it for many years cant remember whrn I didnt I do tobi and other inhaled antibiotics to keep it from causing to much trouble it is common were iam all cfers that I know either have it or doctor say they will eventually get it but that bug hasnt caused me to much trouble its the b cepica that gets me down and worried I would say just stay on top of it best of luch and hope everyone gets healthy and stays healthy pray for cure

 

[LucysMom]

Hello! My daughter cultured Pseudomonas shortly after her first birthday in April of this year. She got started on Tobi right away and did the 28 day cycle, got a clean culture in July. Then we went back for a check up at the end of September and she cultured it again. Now she has been placed on Tobi for 28 days on, 28 days off, 28 days on, 28 days off, etc. indefinitely. I asked my CF Care Team how long we can expect her to be on the Tobi; they said some doctors prefer clean cultures for a year before taking the patient off of Tobi and said some patients require it lifelong. I am hoping my daughter doesn't have to do the Tobi treatments lifelong!

CF patients culturing Pseudomonas is quite common as I understand it. That's because the bacteria is practically everywhere; in the dirt, in bath/drinking water, etc., which makes it difficult to prevent a CFer from growing it. It is not harmful to those who do not have CF, but can be harmful to those who do have CF if not treated. I am not sure what good it would do to wait a week to receive the results of another culture. If I were you, (and I'm not, so please do what you're comfortable with!) I would get your daughter started on the treatment as soon as possible. The purpose of the cultures is to catch those bugs before they become a bigger issue in her lungs, and Tobi treats the bacteria aggressively, so that is what we felt was the best option for our family. My daughter has shown no signs of sickness or infection either time she cultured Pseudomonas, so that tells me it was caught early.

I hope this helps. Good luck with everything! Please let us know how it all turns out.

 

[Beccamom]

If you are concerned about the baby tolerating Tobi neb, maybe ask to do the first treatment at the CF clinic.

 

[Helenlight]

Hi Janet,

Just a couple of questions:
Where did they get the culture? Directly from lung mucus, throat or nose?
and: what is your daughter's current condition? healthy, no cough; or cough and losing weight?

If the culture was from lung mucus and she has a cough, treating would be the best option. You can always take a 2nd culture at the start of treatment just in case of lab error and stop treatment if it comes back clear. PA in the throat or nose but with no other symptoms could be common for anyone, but work closely with your team to decide best plan of action.

Strangely my Dad told me that I had an ear infection that grew PA when I was a kid (I don't have CF), so it is possible in other people, it's a relatively common bacteria. But you def want to keep it out of the lungs of PWCF as much as possible.

Best of luck,
Helen

 

[Mama2Five]

Thanks for the input everyone.

Because she shows no symptoms, we cultured again today at the recommendation of her DR and will hopefully have the results by Friday. If it wasn't transient and it cultures again, we will treat ASAP.

I did get a "teaching" session on how to use the pari neb--through dvd and then the nurse went over it with me with equipment she had there. So if the pseudomonas are still there, I feel prepared to begin on my own (husband too). I'm nervous about how a 2 month old baby will respond to having to do this, but they told me that the crying she'll do is good because she's taking big gasps of the mist.

 

[Mama2Five]

Hi Janet,

Just a couple of questions:
Where did they get the culture? Directly from lung mucus, throat or nose? Throat
and: what is your daughter's current condition? healthy, no cough; or cough and losing weight? NO cough, she was stuffy but it was never runny nor any nasal discharge--just SUPER dry and it even seems to have cleared up by noon. No fever. Weight gain, they'd like to see her gaining more but she was at 11.2 lbs last week (7.5 weeks old) which was the 60th percentile. I should point out that she is being considered as CRMS right now because of her lack of symptoms and intermediate sweat test (33 and 31).

If the culture was from lung mucus and she has a cough, treating would be the best option. You can always take a 2nd culture at the start of treatment just in case of lab error and stop treatment if it comes back clear. PA in the throat or nose but with no other symptoms could be common for anyone, but work closely with your team to decide best plan of action.

Strangely my Dad told me that I had an ear infection that grew PA when I was a kid (I don't have CF), so it is possible in other people, it's a relatively common bacteria. But you def want to keep it out of the lungs of PWCF as much as possible.

Best of luck,
Helen

Thanks so much Helen!

 

[Mama2Five]

Just a quick update--the pseudomonas did not show up on the culture again this time. Something else did show up, I didn't understand the name of it and am waiting for spelling clarification but there's not much information in it out there? Anyhow, if we were to treat it, it would be with augmentin or cipro but she's hesitant to treat her with such harsh antibiotics since she's so young and show no symptoms of any kind of infection. We have our appointment in 13 days, so we'll culture then and see if anything comes up again. In the meantime, I'll keep an eye for any cough, fever, out of the ordinary changes, etc. She pointed out that we can't say for sure that pseudomonas aren't in the airway and lungs, and we can only go as far as the throat to check-but she's just really not comfortable treating especially since she hasn't been diagnosed with CF and is showing no symptoms.

So there's our update!