Pseudomonas question?

[Justinsmama]

Hi,

I have a question for those who have children that have cultured psudomonas without many symptoms or only a non-productive cough. Could you please tell me more? My son Justin (9) has had some problem since last Feb. From Feb to June he had a drop in his small airways (25-75) from a high of 90 on oral steroids (I was told this is his new baseline) to a low of 55%. His daughter in the end of June ran another course of antibiotics to kick it out of him. He had been on several over this time. Over the summer he got a foot infections and was treated for MRSA and Pseudo. Our (wonderful) CF doc thinks he MAY have had psuedo in his lower lungs (where he tends to get infections) and they just didn't show up in culture. His early Oct appointment (right after the foot treatment) rebounded almost to baseline. Since June we have added another inhaled steroid (Qvar) to his Symbicort. He is now back to dry cough on exertion and when he first goes to lie down. He is fine once he falls asleep. We go to the Center in two weeks due to rescheduling because of ice and snow. He also stretches his neck to get a breath when he has this cough or has to sit up from lying down in bed. Not sure if this is asthma or an infection. He had no baseline until 1 year ago now he has this cough again all of the time. Thanks!!

 

[2roses]

Please consider going back to your CF team and insist they treat the possible PA aggressively. I would not accept a 9yo with a new baseline that has dropped that much. He is too young. What I mean by aggressive is IV antibiotics that have been tested on a sputum culture as effective against what your son is growing. Add intensive respiratory treatments 4x a day with extra hand CPT on the bases every time. RTs will say that the vest is just as good but most CFers will tell you stubborn areas, like bases, respond to the vest AND hand CPT. If you aren't doing hypertonic saline, add it to mobilize secretions and open up those bases. Steroids as part of the aggressive course also reduce inflammation and help open up airways. All of this together can work wonders.

My two CF DDs have cultured resistant PA with mild symptoms (when healthy, more symptoms when sick) for most of their lives. We can't get rid of it, but their PFTs are strong. My older DD, 20, has had bad bases for probably 10 years. When she gets sick, the bases are always impacted.

Without knowing the situation, I think there's hope you can get a possible PA infection under control, perhaps even eradicate it, in your son with aggressive treatment ... and thereby limiting permanent lung damage PA can cause.

Good luck!