PCD Family Support Group (UK)
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Pseudomonas since before Christmas

Hi everyone,

My daughter ( she'll be 4 tomorrow) had sputum collected just before Christmas last year and came back she had pseudomonas. She had been put on gentamicin(antibiotics) for a month and took another sputum test afterwards its still there. So been put another 4 weeks course of gentamicin but last time did sputum test its still there. Now our specialist put her on another course (third time) plus oral ciprofloxacin. Here where i live we only have cipro in tablet so i have to crush it and mix with water. It doesn't taste very nice and my daughter keep refuseto take it. My specialist said if she doesn't take the cipro then we might have to do iv at hospital. But the thing is since last christmas my daughter seems fine. She doesn't have any fever or sick at all other than her mucus is thicker and stringy ( but clear). We also have her birthday party organised next two week and she is so excited and keep talking about it. If we really have to go hospital it means we have to cancel the party and she must be so upset.. i'm so frustrated at the moment.. anyone had this situation where pseudomonas won't go away?

Thanks

Luci

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Hi Luci - sorry to read this. Psuodomonas is very difficult to get rid of and normally iv’s are needed ... followed by up to a year of nebulised colomycin twice a day. It needs to be treated aggressively the first time you get it because otherwise it can stay for ever. It can cause lung damage so it it best to try and get rid of it ASAP. Can you see if you can get liquid Cipro (it comes as a dry powered that you add water to) from hospital? If she needs to go into hospital can you plan that she goes after her birthday? Or at least comes out for her party? Good luck and let us know how you get on. Fiona

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Thanks Fiona.

Unfortunately here in Australia we don't have liquid Cipro ( told by my specialist). I won't be seeing my specialist until next thursday so at mean time we have to push giving crushed Cipro. Just wondering if your boys had this bugs before? Were they looking well and not sick when they had this? I definitely will keep you posted.

Thanks

Luci

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that's a shame.... Yes my boys have had it a few times. They felt really poorly when they first got it but after that it went back to 'normal' quite soon but coughed more. They also said when they had it the sputum tasted funny. One of the problems with PCD is that they often look and feel well when they have nasty bugs. Good luck x

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Pseudomonas aeruginosa is a tricky bacteria to treat for people with PCD and Cystic fibrosis with limited families of antibiotics available. So sorry to hear your daughter has this infection for so long. Consider IV treatment if needed for your daughter and give her lots of hugs from her mommy with reminders that tomorrow is going to be a better day. I have a four year old too and when she is sick noticing else matters. My heart goes out to you and your family...

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