Living with pseudomonas

My son is 8 and cultures PAin the off-tobi months for the last 14 months. Hospitalized for Iv medication -though no clinical symptoms were present- but it seems he is colonized now. As i said he does not have clinical symptoms. We are serious about chest pt and all other medications. It seems we will live with this bug:( Are there any people who are doing/living well with this bug? Or maybe did well for a certain period of time before it really started to have a bad impact?

5 Replies

  • That must be so difficult for you and your son denko and he should not be going through this at only 8 years old. I just wanted to welcome you and hope someone will be along who understands pseudomonas and all that goes with it.

    Wishing you well and your dear son too. Xxxxx

  • Hi Denko, I am sorry to hear about your son. I have been colonised with pseudmonas for 5 years or more. I go through periods of constant chest infections. And have antibiotics one after the other. I may get 4/5 days free from infection and it starts again. however the passed year these episodes have been getting further and further apart which give me hope we are finally getting to the bottom of this infection. but I also have bronchiectasis and aspergillus which complicates my recovery. I hope your son gets relief from this bug he is so young but children are very resilient. breathe easy good luck.

  • My son is 34 & has had pseudomonas most of his life. He was diagnosed with Cystic Fibrosis at 3 months old. He has a host of illnesses not associated with the CF but certainly complicates it. He has never really shown clinical symptoms for the pseudomonas but his sputum cultures are always positive for it. He has tobramiacine up drafts for his nebulizer he does 3-4 times daily. He has built up an immunity to several antibiotic treatments & is very allergic to he most effective antibiotics needed to treat him with. Toby is all that's available to treat his pseudomonas with. Since it is airborne, normal people(you & me) are able to fight it of easily. CF kids, however, do not have this luxury. I hope your son has much better prognosis than mine has. Soak his neb tubes, mouth pieces, etc in a vinegar/water solution to help sanitize & kill the bacteria, viruses, etc.

    I'm sure you've been informed but never use a vaporizer or humidifier as they breed the pseudomonas. I think if his allergies to the meds needed for treatment weren't so severe they may have been able to irradicate it.

    Prayers to you & son for a speedy recovery!🙏🏻🙏🏻🙏🏻

  • Do you use pulmozyme and hypetonic saline regularly and do chest physiotheraphy?

  • I know he uses the saline & toby in his nebulizer but I'm not certain of what else he uses. He is 34 & lives in another state & I'm hoping to move him here with me. We did pt for years then he was given a pt vest until he began coughing up blood from the small capillaries bursting from it & it was discontinued. He hacks up the sputum as he does his neb treatments. He had a stroke about 6+ yrs ago & we learned he has lupus then. The lupus has affected his blood negatively & sees an oncologist for it. He takes enzymes with his food, a sleep Rx, an antidepressant, Coumadin, & a Rx pain med. He had his intestine knot up & rupture in 2011 requiring emergency surgery. & he got a port about 10+ years ago that is still working well.

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