Saydee

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anonymous

New member
Saydee just got her culture back just 1 month after she cultured Psued. last month. They put her on cipro for 14 days and Tobi for 28 days still has 9 days left of that to take then has 28 days off and they will do another culture then to see what it shows. Could she have erradicated it this quick or could it be hiding. She is only almost 9 months and the month before she cultured nothing so in a matter of 3 weeks before her next culture she caught the pued. But now this culture is clear of everything. Could it be that they caught it in time before it went in her lungs so it was just in her throat? Please respond if you can.
Katina(mom of Saydee)
 
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anonymous

New member
Congrats on the good culture results! It could have been just in her throat, it could have been in her lungs and the antibiotics got rid of it or it could be hiding in her lungs still (let's hope not). Our clinic kept Sydney on TOBI until she had 4 clear cultures, just to make sure it really was gone. I hated keeping her on it but I suppose it is worth if since she hasn't cultured it since last October.

HTH and Hugs,
Kelli
 
S

SeasonsOfLove

Guest
I believe in the last 5-10 years there has been a change in thinking on how to treat pseudomonas when it is first cultured - now they treat aggressively at the first sign of it (whereas in the 80s and 90s there was more of a wait & see approach).

Good luck - I hope Saidee feels better now!
 
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anonymous

New member
Me again Katina, I wanted to ask if you are going to finish out the last 9 days of TOBI or if you are stopping since it didn't show in her culture? I will tell you that for my daughter, she cultured pseudo just after being diagnosed and then had another culture done during her first round of TOBI, which then showed no pseudo. Our CF doctor told us that we could go ahead and stop giving her the TOBI since she didn't culture it (at that point we had like 8 days left and we were happy to stop it)...well, she cultured it again at her next visit a couple of months later, by then we had switched docs for other reasons and our new doc says that she never should have stopped taking the TOBI until the full 28 days was done, even though her second culture was clear...in fact our new doc wanted her on it until she had 4 pseudo free cultures just to be sure. Like Kathy said, I think the key is to treat it aggressively in the beginning while there is still a chance to get rid of it. Also, as an FYI last year the CFF announced/decided/discovered/etc that the best way to treat psuedo during the first cultures is with the 14 days of CIPRO and 28 days of TOBI so it is good that Saydee did that.

Kelli (mom of Sydney 2wcf)
 
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anonymous

New member
Iam finishing the 9 days of Tobi.The only thing that Iam worried about is with the Tobi she did like 6 days of it full strength then she lost her voice and was caughing so they cut her back to half a vile 2x a day instead of 2 viles a day.But her doctor said it was to strong and that is why she had lost her voice and stuff. When she cut the dose her voice came back and no caughing. So I asked about the dose being to weak but they said they didn't think so and wasn't worried about it.So hope things are gone.... The strange part is Saydee didn't even have any symptoms of having this bug not even stuffiness or a slight cold.Well thanks for responding and hope to talk again.I live in a small town in NY and have not been able to find any cf family that has a little one and cultured psued. They have older teen to adult children that cultured it around 10 or so.
Katina(Saydee's mom)
 
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anonymous

New member
Me again! I think it is common to cut the dose in infants since it is a "one size fits all" med it can be too much for the little ones. My daughter never showed any symptoms of pseudo infection either, which makes me wonder if she had just picked it up bc she spent one day in the hospital (at her diagnosis) a few weeks before her first culture was taken. Of course, we also wonder if it was really in her lungs of just maybe in her throat. It is just impossible to know for sure. Anyway, keep us updated on how her next cultures turn out!

Hugs,
Kelli
 
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