We just found out that our daughter had a + culture for PA . This is a first for us and were a bit shook up. We went in last Thursday for a second culture, and will find out about it this Thursday or Friday. We haven't heard much about what kind of treatments to expect. She has only been to one "clean out" and that was over 2 years ago. At that time she didn't have any growths of any kind. At the beging of this year (3mo ago) she cultured stenotrophomonas maltophilia (this was our very first + culture for anything). Which we soon found out the dr. wasn't to concerned about. We were on a 21 day course of septra. I have so many thoughts and worries going through my mind I don't know where to start. Any comments or advice would be great. Along with any insite on what kind of treatments to expect. Currently all we do is cpt, neb w/ albuterol prn, enzymes, adek and flonase. Thanks Sandi
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pseudomonous need help
- Thread starter anonymous
- Start date
my son cultured psuedomonas 2 x last year once in aug and again nov, both times he was put on tobi and septra for a month at a time and next culture was fine. tobi was great .he is 27 months next week and doing good at this time. he does the vest 2x aday and pulmozyme 1 x,ursodol 2x,adeks chewable and ultrase enzymes. i worry about swimming pools and shopping carts more than anything else as far as p.a. use alot of antibactial wipes ! good luck! sorry to hear about the p.a. scary huh?amy mom to nathan 2 with cf
Hi Sandi, my 10 yr old was + for pseudomonas last november she was given a picc line iv for antibiotics for 2 weeks and 28 days of tobi she had no symptoms pfts inthe 90's ,but in juneof 2003 she was recultured and once again was + for pseudomonas she got another picc line for her iv and hadf 2 weeks of antibiotics and 56 days of tobi breathing treatments,she is doing great now but we will not know until we go back to clinic in august to see if she still has it, if she does we must just live with it because we treated it very aggressivly.I would tell you childs doctor to treat the pseudomonas has aggressively has they can it may get rid of the pseudomonas. Good luck Carolyn.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Sandi, my 10 yr old was + for pseudomonas last november she was given a picc line iv for antibiotics for 2 weeks and 28 days of tobi she had no symptoms pfts inthe 90's ,but in juneof 2003 she was recultured and once again was + for pseudomonas she got another picc line for her iv and hadf 2 weeks of antibiotics and 56 days of tobi breathing treatments,she is doing great now but we will not know until we go back to clinic in august to see if she still has it, if she does we must just live with it because we treated it very aggressivly.I would tell you childs doctor to treat the pseudomonas has aggressively has they can it may get rid of the pseudomonas. Good luck Carolyn.<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi -- Both of my girls have cultured for pseudo. Unfortunately, once they have it, they have it. It can remain dormant but it is generally still there. Our CF doctor treats this with inhaled antibiotics which are TOBI or colymycin. Tobi is the child inhales it for one month then off one month. It keeps the pseudo inactive. If a flare-up should occur, then sometimes the colymycin is added on the off Tobi month. If the cough is productive (by that I mean -- gone into bronchitis or pneumonia) then IV antibiotics are added. But, not just with the diagnosis of pseudo. So, dont panic. My guess is your child will begin inhalation therapy. It is not pleasurable for them they have to sit longer but it is certainly better than an IV. Good luck!!
Hi -- Both of my girls have cultured for pseudo. Unfortunately, once they have it, they have it. It can remain dormant but it is generally still there. Our CF doctor treats this with inhaled antibiotics which are TOBI or colymycin. Tobi is the child inhales it for one month then off one month. It keeps the pseudo inactive. If a flare-up should occur, then sometimes the colymycin is added on the off Tobi month. If the cough is productive (by that I mean -- gone into bronchitis or pneumonia) then IV antibiotics are added. But, not just with the diagnosis of pseudo. So, dont panic. My guess is your child will begin inhalation therapy. It is not pleasurable for them they have to sit longer but it is certainly better than an IV. Good luck!!
Hi Sandi,Steno and then psuedo... the treatment will depend on what type of doctor your child has... aggressive or treats only when there is a problem. If aggressive the doctor may do IV's (steno can be gotten rid of, but you have to hit with hard antibiotics and for a longer period as it is quick to mutate and become resistant, not really a "damaging" bug but can lead to a perfect breeding ground for psuedo and other nastier bugs). My son is 8 and has not cultured psuedo yet, but did culture steno (over 4 years ago) and has not cultured again. He did 24 days of IV's and then two weeks of bactrim and Tobi and Pulmozyme. I would definitely advise to try the "seek and destroy" with the steno and would try to get rid of the psuedo (there are studies that show in I believe Sweden, they are finding if hitting the psuedo hard and aggressive it can be gotten rid of).God luck to you and your family,Daelynn<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Sandi,Steno and then psuedo... the treatment will depend on what type of doctor your child has... aggressive or treats only when there is a problem. If aggressive the doctor may do IV's (steno can be gotten rid of, but you have to hit with hard antibiotics and for a longer period as it is quick to mutate and become resistant, not really a "damaging" bug but can lead to a perfect breeding ground for psuedo and other nastier bugs). My son is 8 and has not cultured psuedo yet, but did culture steno (over 4 years ago) and has not cultured again. He did 24 days of IV's and then two weeks of bactrim and Tobi and Pulmozyme. I would definitely advise to try the "seek and destroy" with the steno and would try to get rid of the psuedo (there are studies that show in I believe Sweden, they are finding if hitting the psuedo hard and aggressive it can be gotten rid of).God luck to you and your family,Daelynn<img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Sandi!First, take a deep breath. It sounds as if you are doing everything you can be right now and if you trust your doc, then know that if something doesn't concern him/her, you probably needn't worry. I would suspect that they would put her on Tobi or have her do another clean out. I wonder how old your daughter is. How is her growth? My daughter Katie is 12. Was diagnosed at nine, although I knew a year before. Hard to convince the docs. She was diagnosed right after having sinus surgery. Since having her first, and only, clean out (to date) she has not cultured psued again. However, that doesn't mean it's not there, it just means the numbers are low. I was told that we all have psued in us, it's just those of us without CF are able to process it better so that it doesn't have the chance or environment to overgrow as it does with CFers. She has cultured staph, and ? and has been on Kflex and Bactrin ~3 times since December. Kate does a regimen every morning that consists of her Pulmozyme & vest, then takes Advair, until today was on Flonase, will be going off to see how that goes, her vits, her enzymes, 1400mg Motrin 2x/day, and added today is Zantac. She had also been RX'd Albuterol by her pediatr. but her Pulm Dr. said the dosage was too high and said to try the Zantac. Fingers are crossed. Her numbers are good, we just hope they continue. Take care. Gwen, Katie's momP. S. A lot of the bacteria that we worry about with our kiddos are water borne. Try to keep her away from public pools, showers, waterslides, jacuzzis. Also, in the fall, be sure she is not out raking as that action can disturb bacteria as well as fungis under the leaves that can be harmful to CFers.
Hi Sandi!First, take a deep breath. It sounds as if you are doing everything you can be right now and if you trust your doc, then know that if something doesn't concern him/her, you probably needn't worry. I would suspect that they would put her on Tobi or have her do another clean out. I wonder how old your daughter is. How is her growth? My daughter Katie is 12. Was diagnosed at nine, although I knew a year before. Hard to convince the docs. She was diagnosed right after having sinus surgery. Since having her first, and only, clean out (to date) she has not cultured psued again. However, that doesn't mean it's not there, it just means the numbers are low. I was told that we all have psued in us, it's just those of us without CF are able to process it better so that it doesn't have the chance or environment to overgrow as it does with CFers. She has cultured staph, and ? and has been on Kflex and Bactrin ~3 times since December. Kate does a regimen every morning that consists of her Pulmozyme & vest, then takes Advair, until today was on Flonase, will be going off to see how that goes, her vits, her enzymes, 1400mg Motrin 2x/day, and added today is Zantac. She had also been RX'd Albuterol by her pediatr. but her Pulm Dr. said the dosage was too high and said to try the Zantac. Fingers are crossed. Her numbers are good, we just hope they continue. Take care. Gwen, Katie's momP. S. A lot of the bacteria that we worry about with our kiddos are water borne. Try to keep her away from public pools, showers, waterslides, jacuzzis. Also, in the fall, be sure she is not out raking as that action can disturb bacteria as well as fungis under the leaves that can be harmful to CFers.
Thanks for the reply. My daughter just turned 5 at the end of May. Our cultures since the + one for the Stenotrophomons maltophilia have all came back - for growth so far. Our plan for the +PA culture was to join a study on tobi and long term use > 56 days. We went in for a bronch last week and if/when the cultures came back to show + growth for PA in her lungs we were to start the study. But to our shock the cultures came back negative. They did do another throat culture while she was under for the bronch and that did come back postive for PA. So now were not able to join the study but we are doing a 28 day course of TOBI. We go back at the begning of next month. As for the pool thing. We have been going to the pool every day throughout the summer. That is the only new thing we have done or change to our routine. So I asked about the risk of her getting these thing from the water or enviroment around the pool. The dr told me no but was more than happy to look further into it. After a coulple days she called me back and told me after discussing it with the other team members they could find no evidince that she would be more pron to getting/catching them in a pool. And in fact a pool/swimming was an excelent cardio activity for her and her lungs and I should not stop going. The leaf thing...I have never thought about that. But I could defintly see what your saying. She starts school in the fall and I am real worried about how she will do. We have been able to keep her out of daycare so far. She has been involved with group activies and such but not for half a day five day's a week. I also worrie about the air cirulation in the school. I'm not sure why it even came to mind, but one day last week I started thinking about how old the school building is and wondered how new or updated the air exchange system was (heating/cooling and such). Thanks again for your reply. Sandi
Thanks for the reply. My daughter just turned 5 at the end of May. Our cultures since the + one for the Stenotrophomons maltophilia have all came back - for growth so far. Our plan for the +PA culture was to join a study on tobi and long term use > 56 days. We went in for a bronch last week and if/when the cultures came back to show + growth for PA in her lungs we were to start the study. But to our shock the cultures came back negative. They did do another throat culture while she was under for the bronch and that did come back postive for PA. So now were not able to join the study but we are doing a 28 day course of TOBI. We go back at the begning of next month. As for the pool thing. We have been going to the pool every day throughout the summer. That is the only new thing we have done or change to our routine. So I asked about the risk of her getting these thing from the water or enviroment around the pool. The dr told me no but was more than happy to look further into it. After a coulple days she called me back and told me after discussing it with the other team members they could find no evidince that she would be more pron to getting/catching them in a pool. And in fact a pool/swimming was an excelent cardio activity for her and her lungs and I should not stop going. The leaf thing...I have never thought about that. But I could defintly see what your saying. She starts school in the fall and I am real worried about how she will do. We have been able to keep her out of daycare so far. She has been involved with group activies and such but not for half a day five day's a week. I also worrie about the air cirulation in the school. I'm not sure why it even came to mind, but one day last week I started thinking about how old the school building is and wondered how new or updated the air exchange system was (heating/cooling and such). Thanks again for your reply. Sandi
My son Jackson was found with pseudomonous at 9 months old. He is now 26 months and has had about 6 or 7 exaserbations since then. We do things differently here in Australia, if he gets sick they check for it and start him on oral antibiotics ( usually Fluclox and Cipro) and if no improvement in 2 weeks admit him for IV antibiotics through his port-a-cath ( Tobramycin and Timentin). This fixes him up as good as gold. They are currently trialling the use of Tobi to see if it makes any difference, he is not in the trial though, and to date they havent found that it is any more effective than our treatment. Dont worry though, as it was explained to me there is nothing we can do to stop our kids from getting it, just getting onto it quickly is the best thing we can do. Hope you feel better about all this soon.Steph, mum of Jackson, 2, who has CF
Hi again: my little girl had tested positive for pseudomonas once and I was really beside myself. I couldn't believe I had let that happen as I am an obsessive hand washer and carry alcohol wipes everywhere I go. I choose my place to shop and eat carefully. The CF physician said it is everywhere and I cannot stop it. These kids will inevitably show it; but it still worries me to no end. Mary
Addendum: regarding Tobi and the nebulizer, my little girl had been in for one "tune up" (as it is called here). She was on Tobi & Cipro via picc line as an aggressive treatment. Yes, usually they are in for 2 weeks minimum but I was able to bring her home after 6 days and do the infusion myself. When the picc line came out, she went on the Tobi & nebulizer; 30 days on - 30 days off. She stayed on this for about a year & half. She asked me one day how long will this go on? The next CF visit, I asked the pulmonologist this question. I knew the answer as I had read the Danish studies. At first, this was thought to be the gold standard of treatment but later was determined not known if effective as thought. Too long on an antibiotic is usually not good as resistance occurs. The doc said I leave it to you, the parent, because we frankly don't know if it helps or harms. I left her off for now. Previously, another newer CF doc had put her on Bactrin and left her on for 2 years. She grew pseudomonas anyway and that is when she went in for the IV antibiotic therapy. Mary Young
Hi Sandi, my daughter is 5 also and will start school next week. I am beside myself with worry about everything! So far, she has had a nanny at home (for her and her baby sisiter) and went to pre-school for 4 hours three days a week. Now she'll go to real school, everyday, for 7 hours! I have been able to control everything so far, from when and how she takes her enzymes and other medicines, examining her poops for sins, hand-washing, who she plays with, etc. Now I feel as though I will be losing control over these things. She has been pretty lucky so far but I am terrified that she will be exposed to P.A. and will probably culture it next time. I am a complete basket case right now. I have a meeting scheduled with her teacher and prinicpal today to go over her care and needs. Any pointers will be appreciated, especially ideas on how to handle enzyme administration. The school will hopefully allow the teacher to keep it with her so that Maya doesn't have to go to the office before every meal or snack. Thanks for your help.Lucy (mom to Maya 5, w/ CF & Nina 2, w/o CF)