Hi my son was dx @ 6w/cf he is now 7. We have Dr apt this week @ the CF clinic. I was told when he was diagnosed and tested pos for psedo there was no way to really eradicate it. His was not resistant either. They have him on Tobi every other 28 Days. But from what I'm hereing maybe I should be pushing this more or looking for a 2nd opinion. Please forward me your suscess stories and what they used so I can ask our Dr. to either try it or ... My son shouldn't have to live with psedo if he doesn't have to yet.ThanksKelly<img src="i/expressions/face-icon-small-mad.gif" border="0">
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Psedomonas, Can you Really get ridof it???
- Thread starter anonymous
- Start date
as i understood it, once you have pseudomonas, it stays in the lungs, and i checked out the annual conference notes from last year (to make sure ive got my facts straight!) and their exact wording is "Once established, infection with Pseudomonas is impossible to eradicate." but it IS possible to control, i first grew pseudomonas when i was 5 years old and was imediately put onto gentamycin and colomycin nebulisers...and didnt grow it again till i was about 15! when people dont grow it for a long time they will often say they "got rid of it" and i dont understand the full ins and outs of it, just that you cant really erradicate it. im sure that the doctors are prescribing all the right meds, but if you have concerns, question them, push them and always ask because then you can put your mind at rest.hope that helps a bit <img src="i/expressions/face-icon-small-smile.gif" border="0"> good luck!
Hi - My understanding is that the mystery is in the wording. It seems as though it depends on the colonizing of the bacteria. If it is not colonizing; not apparent in high enough quantity; not symptomatic; it may not be cultured. Also, it may be so far in the lungs or sinus' that it doesn't culture with a regular deep throat culture. In the past, a deep throat culture may not show it, yet a bronchoscopy culture does. As a result, quite often patients who are sick more often or symptomatic may try TOBI and/or Zithromax or other Pseud. fighting antibiotics and they work. This is the case with our son who is 5. He had a brochoscopy at 18 mos which is what led dr.s to test for cf. He cultured pseud. at that time. Since then, he has had deep throat cultures many times and only twice did it show pseud. colonization. I hope some of this is helpful.Jo Ann
My daughter, Jaycee, is 5 w/cf. She cultured positive for psuedomonas back March of last year. They started her on Tobi 28 on/28 off. She has not cultured it for a whole year now, so the doctors took her off of Tobi. The way the doctor worded it to me, is that just because she doesn't culture it, doesn't mean it isn't there. It just means that it's not colonized like it was. He decided to take her off of the Tobi since she's been clear for a year to help her not develop a resistance to the drug. I didn't say much more than everyone else, but I just wanted to tell you our success on Tobi alone. Melissa Mc
I believe colonization of the lungs renders Pseudomonas impossible to eradicate. There are clinical case studies where it has been eradicated in young patients. Our daughter had pseudomonas in her lungs, blood, urine and stool when diagnosed. She was nearly dead after suffering from acute malnutrition with a nasty case of RSV.We did 28 days of IV tobra and Fortaz, followed by 14 days of oral Cipro and TOBI for a year straight. She has yet to culture it again and it asymptomatic at this time. She has had two bronchoscopies since that time. Neither pulled a positive culture from deep in her lungs. The ease in acquiring pseudomonas has traditionally indicated patients carried it since the original positive culture. This does not explain why patients who culture pseudomonas later down the road have bugs that are not in mucoid colonies and are not super resistant as would be expected.I believe CF patients easily catch this bug. I believe it can be eradicated but will usually return as the lungs become compromised by the effects of CF.So to answer this question. It can be eradicated but will likely return later. However, complete eardication is difficult and impossible if pseudomonas sets up shop.Don PatinDad to Madison -Age 2 wCF, Caroline 3 ncf, Lauren 8ncf
Hi, My daughter is four and has only had sputum tests (no broncoscopy or anything else) The first time she showed speudomonas was at dx (9and 1/2 months) she was admitted and had the 14 day IV course of tobra and another antibiotic (can't remember name) She was in 3 more times for infections and showed pseudo all three times. She showed it at her annuals last year and this year they said that even though it didn't show she probably still has it in her lungs, just not in a high concentration since she has been on tobi for 2 years every other month, bactrim on the off months. I was told to assume that it is there even when it doesn't show on the culture as it may be deep down in the lungs. We have tried to avoid a broncoscopy as it isn't a comfortable procedure. There seems to be a new idea that CFers can get rid of pseudo but it is supposed to be quite difficult. By all means discuss it with your CF doc! There are no dumb questions when it comes to the health of your child. Good Luck!Andrea
This may sound dumb...but how do they do a culture...do they HAVE to do the broncospy (?) thing to get a culture. Is that a scope procedure??? Do they put you to sleep??? I don't know...We haven't done this yet??? Our little one has chronic sinus issues/inflammation and now tested positive for immunogloublin igE (E) with shows that her breathing system has inflammation (Asthma). She also has GERD, mild cerebral Palsy, and now they think she has Aspergers (a mild Autism) on top of everything.....Has anyone had a overnight sleep study to ck out their night time breathing??? Its called a somograph/somogram....Thank you.
When they do a culture all they need is a sputum sample. If your child can cough mucus up by themselves that all you have to do. Spit in a sterilized cup at the clinic. If your child can't spit it up by themselves I think they use a long q-tip looking thing and get a throat sample, which I think all they do is swab the back of the throat., but I am not sure as i have always been able to easily cough up mucus any time of day. LOL.
My daughter is only 14 months old, and does not cough anything up right now. So they use a very long q-tip looking thing and basically gag her with it. I assume they swab the back of her throat. She just had a culture, and we are anxious to see what grows on cheerios as her mouth was full of them at the time. <img src="i/expressions/face-icon-small-smile.gif" border="0">christiemommy to twins malachi w/o cf and mylee w cf
Hi Christie,Just wanted to introduce myself. My name is Dea..I met your husband at the last Great Strides meeting...I recognized the names of your children on your post...Malachi and Mylee are adorable!!! Anyway, I am 29 with CF..and have a daughter of my own...thank goodness she didnt get the CF. Didnt know your email..so thought I'd say hi here!Hope to see you at the walk on the 26th!Dea Mason