My 11 year old daughter has been very healthy until the past few months. She has only been hospitalized once (at diagnosis at 5 months), her lung function is always 100%, and takes minimal meds. She has had a very normal life until now. She cultured Pseudomonas for the first time and I am worried. Her doctor acts like it's nothing and so does her father (we had a nasty divorce and custody dispute and don't get along well). But from what I've read, it can signal the beginning of a health decline. Her md wanted to wait a few weeks for iv treatment to start and her dad agreed. But I insisted and now I'm afraid I look like a crazed mom. Anybody had a similar experience?
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new pseudomonas culture
- Thread starter anonymous
- Start date
Don't worry. yes it might mean a few more time she gets sick or may need ivs but she will still be the same girl having a normal life. I have cultured psuedomonus since I was 10. I am now 21. I have had my rough patches. I have been in the hospital lots of times. I have been sick to where i was in the hospital or on home ivs 6 times a year for 2 years straight. But mainly stress and not sleeping well brought that on. I am doing well now. For the past 2 years I have been hospitalized twice and on home ivs twice. I have been able to keep this better health that I have. Years ago when a cf child was diagnosed with psuedomonus it was something to worry about because they didn't know much about it. Now they have lots of different medications to help fight it. I have even heard of people getting rid of it completely. For the most part it lies dormant. But when you have a flare up it can bring you down and make you real sick, but you can also get over it pretty easy with the right medications. The main thing is when your daughter doesn't feel good don't let it go untreated for to long because it can make an infection worse and last longer. Thats always the trick get it quick. Just try to remind the ex that if he doesn't help take care of her he will be the reason why she might be sicker. Sorry to be so blunt but Cf is nothign to take lightly and definatly can't be ignored. But jsut remember that the psuedomonus isn't that bad jsut something else you have to fight aggresivly.AB
Thanks for your response. I have been terrified about culturing Pseudomonas for the first time. Common sense would dictate that if a CF child has an infection that treating it ASAP would be prudent. My child's pulmonologist and his staff think I'm being overly dramatic. My gut or instinct or mother's intuition...whatever you want to call it...says to treat it as quickly as we can. It just seems that the quicker it's treated, the quicker her lung function will go up, and the healthier she'll be. I'm VERY confused why her md would want to wait two or three weeks to start iv antibiotics (that we've never done before, so I'm nervous about too). Again, thanks for reponding.
NoDayButToday
New member
Hi,I've cultured pseudomonas for 10 years. Of course it's never a good thing to culture something new, but pseudomonas is no longer the beginning of the end, as it was in the past. I'm doing very well. If it does signal a helath decline, it is a VERY VERY slow one. When I cultured it, I almost immediately was sent into the hospital for IV treatments, after my doctor felt that oral antibiotics would not be as helpful, and therefore a waste of time. I'd definitely ask your doctor his reasons for waiting. It's not dramatic or crazy; it is YOUR daughter after all. Good luck with the IVs<img src="i/expressions/face-icon-small-smile.gif" border="0">
I might let you know that I, too was only hospitalized as a baby & as a matter of fact have not been hospitilized yet for my CF (knock on wood) and I have cultured pseudomonas since I was your daughter's age, probably younger (I am now 37). I took oral meds until about a year ago, then I had my first IV's (I think there were other issues in add'n to the pseudomonas). We all have a different severity, so my mutation of CF may be different than your daughters so what I do may be different than what your Dr's suggest for your daughter, please keep that in mind. Another thought: did they do a sputum culture on her? Sometimes the sputum culture will tell you what drugs the pseudomonas is sensitive to & what drugs the pseudomonas is resistant to, that may help you. As a CFer, my initial response would be to try oral meds for a couple of weeks (unless I have just been feeling terrible), then get out the big guns (IV's) if there is no improvement, but that's just me. There are others that may disagree.The other poster is correct, pseudomonas isn't the serious threat that it used to be. I am willing to bet that almost all CFers that are teenagers or older have some level of pseudomonas, so it is very common w/ CF. Maybe some others can share their thoughts on this opinion?Hang in there and let us know how she's doing! <img src="i/expressions/face-icon-small-smile.gif" border="0">
They've been doing sputum cultures for four months and found nothing out of the ordinary. They did a bronchoscopy two weeks ago and that's when they found the Pseudomonas. The md didn't prescribe any oral antibiotics at all and just wanted to wait a few weeks before starting the IV. And I'm just confused as to why we wouldn't want to try to eradicate this (if it's possible) sooner than later. Sure, waiting a few weeks might not have hurt any, but doing it earlier couldn't hurt either and I'd rather err on that side than wait. Does that make sense?I know that 80% of CF patients culture Psuedomonas before they're 10, but I was hoping we could wait even longer. Hope springs eternal!We go to the hospital for the PICC line tomorrow and are told we'll stay there for up to 3 days. We haven't stayed in the hospital for 11 years and I'm rather anxious about the whole thing. Is that PICC going to hurt her? And I was surprised to hear they were going to put her to sleep for it. Is that normal?Thanks so much for your responses! They are most appreciated! It's reassuring to know you're all out there!
My son has had a PICC line and yes they do put you to sleep to insert it. It should not hurt once it has been insered. It is something they put in so that the iv doesn't have to be restarted and they don't have to go through that extra pain. They can't leave iv's in for a long period of time, so they have to be taken out and restarted. With the PICC line, the need to remove and restart is eliminated. You just hook up when you need it and disconnect in between medication. He says it stings a little when they flush it but that's all. I think it's much better than worrying about the veins collapsing or the iv becoming infiltrated.
I would like to disagree with some other replies. Yep, there are pwcf who do well although they culture positive for PA. And there are pwcf who don't catch PA for their whole life. But those are the exceptions of the rule. To my knowledge 80% of the pwcf today die from lung damage caused by PA. In the past staph aureus has been the number one killer, but since antibiotics against staph were developed and pwcf do live longer PA has taken the place. And imho the main reason why pwcf in Denmark live on average ten years longer than in other countries is, that they have reduced new infections with CF to a minimum since they separate patients with PA from those without. And when you culture for PA they treat it ASAP and consequently. Their results are so convincing that only very few old-fashioned docs cling to the opinion that PA only needs treatment when problems occur.If you want to discuss this topic and many others further with hundreds of other parents of kids with CF, then go to www.cfparents.org and join our large mailing list.PeaceTorsten, dad of Fiona 7wcf (and, touch wood, without PA)
I hope I catch you before you leave for the hospital. The PICC site may be tender to the touch for a few days, but it shouldn't hurt if she's asleep when they put it in. I am surprised that they didn't Rx an oral antibiotic? You are absolutely correct in being "pro-active" with CF. I have been a little lacksadaisal (sp) about it in the past & that was the wrong thing to do, being agressive w/ it is important.One other tidbit---ask all nurses, etc to wash their hands as they enter her room, etc and some people even wipe down the bed, faucet handles, door knobs etc upon arrival in the hospital w/ antibacterial wipes just to prevent your daughter from catching other "bugs" while in the hospital. Let us know how it goes w/ her. We'll be praying for all of you.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks everyone from the bottom of my heart for replying. I don't know any other CF parents and I am feeling so much better just knowing you are all out there. I'm getting ready to leave for the hospital and meet my daughter and her dad there. He is extremely irritated that I insisted this be done this week instead of next week. The md and his staff don't seem too happy about it either. But I still feel we don't need to wait three weeks to do this. And no, her md didn't prescribe anything orally or inhaled. I thought he'd call in some TOBI or something, but he just wanted to wait. But if they want to think I'm being overly dramatic, then they just can because this is my child's life we're talking about.I'm off to the hospital. Thank you all again for your responses. I'm relieved the PICC line isn't going to hurt her. I'm feeling better about that. May God grant you and your families peace. Thank you.
I copied this from the CFFW website. MRSA isn't mentioned and B. cepacia is handled like it should be.http://www.cfww.org/grants/reports/Resport_Dr_Fustik_Macedonia_April2003.pdfDate: April 15, 2003.R E P O R Tfrom Dr. Stojka Fustik about study visit at DanishCystic Fibrosis Centre, Copenhagen, DenmarkThankful to the grant I had obtained from Cystic Fibrosis Worldwide association, I had a wonderfulopportunity to accomplish a study visit to the Danish Cystic Fibrosis Centre- Copenhagen. Upon aninvitation from Professor Christian Koch my study stay in Copenhagen was from March 16, 2003 toApril 13, 2003.The Danish CF Centre is quite large centre with close to 300 followed patients in all age groups. Iwas able to see a great number of them. Regular monthly visits and survey of the patients to the outpatientsclinic including their clinical status, high ad weight, lung functional tests, andmicrobiological control of respiratory secretions, enabled early detection and treatment of lunginfections and early detection of any worsen of patients' condition. Annual assessment of CF patientsinclude: chest X-ray; hematological parameters (hematology, liver and renal parameters, albumin,total immunoglobulin); IgE and IgG antibodies against A. fumigatus; precipitating antibodies againstP. aeruginosa, S. aureus, H. influenzae and other CF bacterial pathogens; CrEDTA clearance inpatients on repeated aminoglycoside treatment; and oral glucose tolerance test (in patients over 10year of age).I got acquainted in detail with approaches to antibiotic therapy of pulmonary infections of CF patientstreated in the centre. Even in asymptomatic patients, whenever pathogens are identified, the patient istreated according to the antibiogram using high-dose 2-week treatment, with combinationchemotherapy in case of S. aureus. Aggressive antipseudomonas treatment for early P. aeruginosacolonization with inhaled colistin and oral ciprofloxacin is instituted in this centre for many years. Inthis way, they succeed to delay or prevent chronic P. aeruginosa infection in great majority (morethen 80%) of treated patients. In view of the important role chronic P. aeruginosa infection played inmorbidity and mortality in CF, these results are great contribution in improvement of survival andquality of life of the patients.In patients with established chronic P. aeruginosa infection, a regime of elective intravenousantipseudomonas treatment every 3 months is employed. That treatment regime was introduced in theCopenhagen centre in 1976 and it was subsequently followed by an improved long-term prognosisand survival of patients with chronic P. aeruginosa infection. The treatment is intensified by addingdaily inhalations of colistin or tobramycin between the course of intravenous antibiotics andsometimes in unstable patients also by giving oral ciprofloxacin. Patients with chronic P. aeruginosainfection are also on continual oral treatment with azitromycin. The analysis of the effect of long-termtreatment with this macrolid (results presented on the last North American Cystic FibrosisConference) showed the improvement of lung function and nutritional status in treated patients.Unfortunately, the number of CF patients chronically colonized with rarer CF pathogens such as A.xylosoxidans, S maltophilia, Mycobacterium abscessus, and P. apista is increased in the centre. Someof these patients showed marked decline in their clinical status. The treatment of these infections isoften difficult due to multiresistent bacteria strains.The other impressive experience I got from my study visit in the Copenhagen CF centre was theimplementation of high hygienic measures and the strict segregation of patients with different type oflung infections. Patients are seen on separate days in the same out-patients clinic, and patients with.B. cepacia are seen only in a special isolation room. Three separate wards with separate nursing staffare used for hospitalization of CF patients according to status with regard to lung infections. Cohortisolation and improved hygienic precautions have resulted in a decrease/elimination of crossinfectionsand a decrease in overall prevalence of chronic P. aeruginosa infection in the CopenhagenCF centre.During my stay in the Copenhagen CF centre I had pleasure to study medical literature (which is veryinsufficient in my country) and I got a lot of written material about different problems concerning CF.I was present at all meetings and conferences of the CF team. I had discussion with physiotherapistabout the physiotherapeutic methods employed in the centre. The only physiotherapeutic techniquerecommended to all patients from the earliest age, after the diagnosis of the disease, is PEP mask. CFpatients also begin to receive dornasa alfa therapy from infant age, based on the experience of thecentre that the earlier patents receive dornasa alfa, the better long-term outcome may be.I had a meeting with the dietitian and we discussed about nutritional assessment and management ofCF patients in order to maintain adequate nutritional status. I had also pleasure to visit a Clinicalmicrobiology department of Professor Niels Hoiby. Professor Hoiby showed me the laboratories andthe techniques used for bacteriological examination of the secretion obtained from the CF patients'respiratory tract. We discussed about the possibilities for improvement the microbiological diagnosisat our clinic and he expressed willingness for further collaboration.At the end, I would like to thank to all CF team at the Copenhagen Rigshospitalet, especially toProfessor Christian Koch, for their hospitality and their efforts to get me introduced with all treatmentand management of CF patients employed in their center. The experience and knowledge I haveobtained from the study visit of the Danish CF centre would be a significant step forward the betterorganization of the CF centre at the Pediatric clinic in Skopje, as well as for improvement of medicaltreatment and overall care of our CF patients. However, CF is high economic cost chronic disease andthe maintaining of therapeutic programme usually requires significant investment from the familiesand public health support system. Therefore, the treatment is limited by finance in many developingcountries. The efforts have to be done to make the newer medications (Dornasa alfa, Toby) andmaybe potentially new therapies available to wider CF population.I would like to express my gratitude to Cystic Fibrosis Worldwide (CFW) association for financialsupport necessary for realization of this for me very beneficial and fruitful study visit to the DanishCystic Fibrosis Centre in Copenhagen.Kind regards,Stojka Fustik, M.D., Ph.DSkopje,MacedoniaApril 16, 2003
My son was 11 months old when we had our 1st culture of PA.I absolutely freaked out and couldn't sleep, I thought my baby was going to decline and his early age scared me as I thought that he was going to be quite severe.We were admitted to hospital immediatly and he was on TOBI IV for 2 weeks and followed by 2 months of nebulized TOBI.He tested negative for his last culture.What I was told was that it is a matter of prevnting it becoming a chronic infection.And like everyone else says the drugs that are available now are much improved from past medicines.I became upset that my BABY had cultured PA I thought he would be a lot older before that happened but the doctors and his nurse didn't think there would be any trouble eradicating because it was the first isolation, I think now for many young people it is a matter of acting as aggressively as possible as soon as you know to prevnt the onset of chronic infection for as long as possible.Good luck!Rebekah Mother to Matt 14mths w/CF
Thanks for all of the responses to my original email. Hannah has had her PICC line in now for 2 1/2 weeks. Her lung function has only gone up 1% and that's a little frustrating. It has gotten clogged twice (due to a home nurse drawing blood from it and not flushing it), so we've missed a few days of antibiotics while waiting to get to the hospital to get it unclogged. But it hasn't been too bad I guess. I was really afraid about the PICC line and culturing Pseudomonas freaked me out big time! I do wonder why sputum cultures didn't pick it up; it was cultured from a bronchoscopy. They did put her to sleep it insert it (twilight sleep). She says it doesn't really hurt now. It was a little sore for a few days, but she's taking this better than me! She only misses swimming, which she spends most of her summer doing. Hopefully she can get it out this week and we can enjoy the last 3 weeks of summer vacation!Her dad is ticked off he's missed the bulk of his summer visitation, but he'll have to get over it. I didn't trust him to do the ivs correctly. He doesn't even do her chest PT when she's with him, so I certainly wouldn't entrust him with this. He just doesn't get this whole CF thing. I hope all of you are doing well. Thanks for being there!