need culture after being treated for PA?

[anonymous]

This is Amber, I forgot to sign in... Sorry if the question is confusing

My son (18 mos.) was hospitalized for a cough that would not clear up after a few rounds of oral antibiotics, prednisone, increased cpt and albuterol, etc. At the hospital the culture they did showed PA. (The previous 4 or so over the prior two months had not). He was treated with two IV antibiotics, and the two week course was over yesterday. So far the cough hasn't returned, like it did a couple days after ending the prior courses of oral meds, but it's only been about a day and a half anyway. Hopefully the IVs kicked it.

The cf clinic has scheduled his next appt. for Oct. 11. They have not seen him since we went home last Sat. There hasn't been a culture since the one that picked up the PA.

Should he be seen for a re-check before that? Doesn't he need a culture to see if it still picks up PA? I know the throat swab cultures aren't very effective (see first paragraph), and I know he the PA might not be erradicated. He cultured it a 6 mos. and did Tobi, it hadn't shown up again til last month. Shouldn't they atleast listen to his lungs? I feel like he could be on inhaled tobi if he's still culturing it.

This was his first time with IVs, so I don't know what the usual procedure is. Plus this is a new clinic to us, we just switched (after moving) in July.

Anyone with experience with this sort of thing? I would greatly appreciate any advice. Thanx!

 

[anonymous]

Some people like to do Tobi month on/month off for a while after a culture regardless of PA culture. Some do Tobi month on/month off only while they culture the PA. Sounds like you and the doctor need to have a discussion about what the best plan is for your son. I would call them next week and ask to start Tobi if that is what you want to do or get a culture if you want to know if he is still culturing it.

My son cultured PA once when he was 12 months. He was on Tobi for 3 continuous months, but his doctor did not want to start with IV's. My son has not cultured it again. I wanted to continue the month on/month off with Tobi but Jack had bronchialspasms (constant, continuous coughing) when he started Tobi back up again. Maybe there is a good reason to do Tobi month on/month off and not 3 months without stopping. Anyway, I asked if I could bring him in once a month for a while to do a culture. His nurse was fine with that and I ended up bringing him in every month for six months. After that I was pretty convinced the PA was gone. I bet you guys are glad to be home!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[anonymous]

Thank you, and yes, we are very glad to be home!

I guess I'll call the doctor next week. I think they should atleast do a culture and listen to him. I don't know, I could be wrong. Couldn't hurt to call. I was starting to think they had erradicated it after the time when he was 6 mos. old, even though I think it's not considered erradicated unless it doesn't show up on a culture for like 3 years(?) It didn't show on a culture or cause any probs for over a year. I'm hoping that the IVs kicked butt.

 

[anonymous]

Damn! I forgot to sign in again! I'm used to the sign in box popping up every time I go to respond (when anonymous wasn't allowed)


Amber

 

[NoExcuses]

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[anonymous]

Thak you all so much. And Amy, I'm glad you responded, I always hope you do when it's this type of subject. I'd do a culture every week if we could!

I'm going to call on Tuesday and ask what exactly they're planning on doing (trying to erradicate it or just using antibiotics when it causes a problem). Seeing as it's only shown up once since last year, I want them to be aggresive and try to erradicate it.

Also, is it possible he has just picked it up again, or is it more likely it's been there all along, just not causing any probs or showing up on cultures? I guess it's possible, but not probable that he's picked it up again?

Amber

 

[anonymous]

I personally would have a culture done every month for the next 6 months and also put him on TOBI (28on/28off) for at least 3 TOBI cycles (6 months total). This is what it would take for me to be convinced it is gone. Best wishes!

 

[amber682]

I just wanted to add that I've got this overwhelming feeling that the other shoe is going to drop. Call it gut instinct, mother's intuition, whatever. Just like when no one could figure out why he was so sick and not getting better after 5 weeks in the hospital, but wouldn't test him for CF because even though I'm a carrier, the test showed his father was not. Just like when he was sick for 2 1/2 mos. and tried round after round of antibiotics, prednisone, and increased types and amounts of breathing treatments, but they just kept letting it go. I swear I knew it was the PA again, but it didn't show up on cultures until he was admitted.

I can barely get my mind off this, and I have my list of questions ready and waiting for Tuesday because I want answers! Maybe they'll be open tomorrow on Labor Day. I don't know, I know I'm rambling a bit and this may seem trivial compared to some of the things other people are dealing with on this site. So thank you so much for understanding. Its just every little noise his nose makes, or every little cough has got me on edge. Seeing as he just finished up IVs I feel he should be better than baseline, not just barely baseline. I'm not even sure I think he is back to 100%.

I just needed to get that off my chest because I'm almost obsessing over it now. Thanks for putting up with me.

 

[anonymous]

Go with your gut Amber! If your CF clinic can't get him in soon enough for a culture you might try his ped - that is where we take our daughter for throat cultures sometimes bc it is closer and just easier all together.

Let us know what you find out!

 

[amber682]

I hadn't thought of having the pediatrician do the culture, I didn't think they'd know what to look for. The ped. is less than a half hour away, whereas the clinic is over an hour. I just can't get it off my mind until I speak to the cf nurse on Tues. I hope they don't think I'm a pain in the ass for wanting answers now, not a month and a half from now. The nurse did tell me once if it's keeping me up at night it should be keeping them up at night. Let's hope I'm not posting on Tuesday about how the clinic doesn't agree with me about this whole PA thing.

Thank you all so much for your advice. Even though my family is very supportive and can give me suggestions when I'm dealing with this sort of thing, you all have a better understanding of what I'm dealing with and can speak from experience.

 

[NoExcuses]

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[amber682]

Thanks Amy, I plan on it! I'm determined to try to erradicate it if we can, and it doesn't seem like the doctors are. I'm not sure what their reasoning is but I'm sure gonna find out!

 

[anonymous]

I read on a different board recently where a mom said that her childs dr told her that after a round of IVs if the pseudomonas shows up in cultures again he wont treat it unless symptoms are shown bc the dr considers a person to be colonized with it once it shows up after treatment. it is amazing how doctors do such different things. i am really happy to know that you are sticking with you gut feelings and taking good care of your boy.

 

[anonymous]

Hmmm, I wonder if this is what they're thinking. If a 2 week course of IV's didn't do it, then maybe he's considered colonized. But they haven't even done a culture to know if he is or not. I feel like he may be coughing a little too much considering we just finished and he barely coughed while on the IVs. I can't wait until tomorrow so I can talk to the cf nurse.

Amber