Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Abby's CF team of doctors was split on whether or not to treat her recently cultured Pa. The bronch did not grow Pa in July but she has cultured via throat swab 3 times in a row. They decided to do one round of Tobi and Cipro. We don't know what to think. We're afraid if we just keep chasing the Pa around it's going to become resistant. If anything I would think we would blow it away with the big guns like IV stuff for 2 or 3 weeks like they do in Denmark. If we leave it alone I'm afraid it will get in the lungs and become chronic. Last time we did Tobi and Cipro she cultured it again just a few days after the cycle was over. However it was only a two week cycle. (?) If anyone has any ideas, let me know. Thanks, Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Joe, this is all new to me too. I know you are worried. My cf coordinator told me that there is a huge debate in the medical cf community about how to treat early pa cultures. She said there is a small study that shows that inhaled TOBI had the same success at IV's, so it leaves the doctors wondering which is really the best course to take. They have already discussed with us the possibility of doing IV's if the TOBI does not help after one cycle. I am all for being aggressive. I just wish a doctor could walk in a room and be able to give us a protocol to follow and know with certainty it would be successful. It seems to be one being guessing game. Sara > Abby's CF team of doctors was split on whether or not to treat her > recently cultured Pa. The bronch did not grow Pa in July but she has > cultured via throat swab 3 times in a row. They decided to do one > round of Tobi and Cipro. We don't know what to think. We're afraid > if we just keep chasing the Pa around it's going to become > resistant. If anything I would think we would blow it away with the > big guns like IV stuff for 2 or 3 weeks like they do in Denmark. If > we leave it alone I'm afraid it will get in the lungs and become > chronic. Last time we did Tobi and Cipro she cultured it again just > a few days after the cycle was over. However it was only a two week > cycle. (?) > > If anyone has any ideas, let me know. > > Thanks, > > Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Joe, We were told the same thing as Sara. Evidently, there are two schools of thought. One believes that the way to go is IV and the other one believes Tobi does the trick. We are doing tobi and just finished levaquin, 3 weeks course, and will continue Tobi for a while. Somebody here, I forget who, said that they had been successful with a 3 month course of Tobi. I do not know if I helped you but it is very frustrating. As Sara, I feel like doctors still do no know what will work and I believe the reason is because of the pathology of the disease. One thing scientists do agree on is that the disease manifests on each patient differently, it is believed, correct me if I am wrong, that the penetration of the gene will make the disease more or less severe. Hence, what may work for one patient may not be as effective for another one. Love to you and your precious brood, > > Abby's CF team of doctors was split on whether or not to treat her > > recently cultured Pa. The bronch did not grow Pa in July but she > has > > cultured via throat swab 3 times in a row. They decided to do one > > round of Tobi and Cipro. We don't know what to think. We're > afraid > > if we just keep chasing the Pa around it's going to become > > resistant. If anything I would think we would blow it away with > the > > big guns like IV stuff for 2 or 3 weeks like they do in Denmark. > If > > we leave it alone I'm afraid it will get in the lungs and become > > chronic. Last time we did Tobi and Cipro she cultured it again > just > > a few days after the cycle was over. However it was only a two > week > > cycle. (?) > > > > If anyone has any ideas, let me know. > > > > Thanks, > > > > Joe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 My almost 2 year old is in a similar position to Abby in that he is intermittenly culturing non mucoid PA and we have gone through many debates about whether or not to treat and if yes, how? My only comment since I obviously have no real answers is to remember a hospitalization and IVs do not come without risks, was hospitalized with RSV for 2 nights last winter and has cultured MRSA ever since. Not a problem now but may be in the long run. My feeling right now is to keep him away from the hospital as much as possible. If you decide to go for the IV's look into doing some of the time at home! Tina mom to almost 2 with CF and Zoe 3 no CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Our son has cultured PA twice over the last year and a half and now just came back with small amounts of MRSA, no PA. We have done two rounds of 28 day inhaled Tobi. Our docs opinion is try Tobi while he is asymptomatic, see if it works. It he begins having issues with PA, then he would move on to other antibiotics, possibly IV. I tend to agree given the small study that said inhaled Tobi is as effective as IVs. Plus, the 28 day on off regimen has been shown in studies to limit significantly resistance. I listened to some of the CRFI 2003 conference on the www.Cfri.org website (go to the bottom of the home page and there is a link to mp3 files). One track in particular was interesting titled 'Latest research'. A research doctor talked about his program of using blood tests and CT scans in conjunction with swabs to detect PA. He said that you can find it 6-12 months earlier than cultures and treat it quickly and strongly, and preventing kids from having to go to the hospital once PA has dug in. The last 3 files in the series are parents in our same boat asking questions about how to get thier clinics on board. very interesting... PR dad to 3yr wCF, 1yr wocf Sincerely, PR > >Reply-To: cfparents >To: cfparents >Subject: To treat or not to treat >Date: Sat, 15 Nov 2003 15:14:36 -0000 > >Abby's CF team of doctors was split on whether or not to treat her >recently cultured Pa. The bronch did not grow Pa in July but she has >cultured via throat swab 3 times in a row. They decided to do one >round of Tobi and Cipro. We don't know what to think. We're afraid >if we just keep chasing the Pa around it's going to become >resistant. If anything I would think we would blow it away with the >big guns like IV stuff for 2 or 3 weeks like they do in Denmark. If >we leave it alone I'm afraid it will get in the lungs and become >chronic. Last time we did Tobi and Cipro she cultured it again just >a few days after the cycle was over. However it was only a two week >cycle. (?) > >If anyone has any ideas, let me know. > >Thanks, > >Joe > _________________________________________________________________ MSN Messenger with backgrounds, emoticons and more. http://www.msnmessenger-download.com/tracking/cdp_customize Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Thanks to all who responded. P R, when the doctors spoke of treating it " quickly and strongly " what was he suggesting using? Tobi? Or did he imply IV a.b's? Usually the 28 day on 28 day off Tobi regimen is for management of mucoid Pa - I'm pretty sure although our docs almost put Abby on it for a year when she was released from the hospital the first time. They decided at the last minute not to since she had a clear swab. The thing that scares me the most is the possibility of chasing the Pa around and making it retreat down deep and possibly build up resistance - when you could pound the hell out of it with IV drugs AND Tobi like the Danes do. Only they use Colistin. Ever seen how low their CF w/Pa numbers are? They must be doing something right. Anyway, I appreciate y'all taking the time to respond, and it did help. Joe > Our son has cultured PA twice over the last year and a half and now just > came back with small amounts of MRSA, no PA. We have done two rounds of 28 > day inhaled Tobi. Our docs opinion is try Tobi while he is asymptomatic, > see if it works. It he begins having issues with PA, then he would move on > to other antibiotics, possibly IV. I tend to agree given the small study > that said inhaled Tobi is as effective as IVs. Plus, the 28 day on off > regimen has been shown in studies to limit significantly resistance. > > I listened to some of the CRFI 2003 conference on the www.Cfri.org website > (go to the bottom of the home page and there is a link to mp3 files). One > track in particular was interesting titled 'Latest research'. A research > doctor talked about his program of using blood tests and CT scans in > conjunction with swabs to detect PA. He said that you can find it 6-12 > months earlier than cultures and treat it quickly and strongly, and > preventing kids from having to go to the hospital once PA has dug in. The > last 3 files in the series are parents in our same boat asking questions > about how to get thier clinics on board. very interesting... > > PR dad to 3yr wCF, 1yr wocf > > > > Sincerely, > PR > > > > > > >From: " Joe " <reamsfarm@m...> > >Reply-To: cfparents > >To: cfparents > >Subject: To treat or not to treat > >Date: Sat, 15 Nov 2003 15:14:36 -0000 > > > >Abby's CF team of doctors was split on whether or not to treat her > >recently cultured Pa. The bronch did not grow Pa in July but she has > >cultured via throat swab 3 times in a row. They decided to do one > >round of Tobi and Cipro. We don't know what to think. We're afraid > >if we just keep chasing the Pa around it's going to become > >resistant. If anything I would think we would blow it away with the > >big guns like IV stuff for 2 or 3 weeks like they do in Denmark. If > >we leave it alone I'm afraid it will get in the lungs and become > >chronic. Last time we did Tobi and Cipro she cultured it again just > >a few days after the cycle was over. However it was only a two week > >cycle. (?) > > > >If anyone has any ideas, let me know. > > > >Thanks, > > > >Joe > > > > _________________________________________________________________ > MSN Messenger with backgrounds, emoticons and more. > http://www.msnmessenger-download.com/tracking/cdp_customize Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Hey Joe, Another thing to think about is that Abby is really young. IV's do not come with some risk, after all is going straight into her veins. One of our members have a cf child that had some kidney damaged due to IV's. So, if the doctors put her on IV, emphasize to the health care people, to check levels on her blood. I am not trying to scare you, but you may know by now how I feel about health care workers in this country. > > Our son has cultured PA twice over the last year and a half and now > just > > came back with small amounts of MRSA, no PA. We have done two > rounds of 28 > > day inhaled Tobi. Our docs opinion is try Tobi while he is > asymptomatic, > > see if it works. It he begins having issues with PA, then he would > move on > > to other antibiotics, possibly IV. I tend to agree given the small > study > > that said inhaled Tobi is as effective as IVs. Plus, the 28 day on > off > > regimen has been shown in studies to limit significantly resistance. > > > > I listened to some of the CRFI 2003 conference on the www.Cfri.org > website > > (go to the bottom of the home page and there is a link to mp3 > files). One > > track in particular was interesting titled 'Latest research'. A > research > > doctor talked about his program of using blood tests and CT scans > in > > conjunction with swabs to detect PA. He said that you can find it > 6-12 > > months earlier than cultures and treat it quickly and strongly, > and > > preventing kids from having to go to the hospital once PA has dug > in. The > > last 3 files in the series are parents in our same boat asking > questions > > about how to get thier clinics on board. very interesting... > > > > PR dad to 3yr wCF, 1yr wocf > > > > > > > > Sincerely, > > PR > > > > > > > > > > > > >From: " Joe " <reamsfarm@m...> > > >Reply-To: cfparents > > >To: cfparents > > >Subject: To treat or not to treat > > >Date: Sat, 15 Nov 2003 15:14:36 -0000 > > > > > >Abby's CF team of doctors was split on whether or not to treat her > > >recently cultured Pa. The bronch did not grow Pa in July but she > has > > >cultured via throat swab 3 times in a row. They decided to do one > > >round of Tobi and Cipro. We don't know what to think. We're > afraid > > >if we just keep chasing the Pa around it's going to become > > >resistant. If anything I would think we would blow it away with > the > > >big guns like IV stuff for 2 or 3 weeks like they do in Denmark. > If > > >we leave it alone I'm afraid it will get in the lungs and become > > >chronic. Last time we did Tobi and Cipro she cultured it again > just > > >a few days after the cycle was over. However it was only a two > week > > >cycle. (?) > > > > > >If anyone has any ideas, let me know. > > > > > >Thanks, > > > > > >Joe > > > > > > > _________________________________________________________________ > > MSN Messenger with backgrounds, emoticons and more. > > http://www.msnmessenger-download.com/tracking/cdp_customize Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2003 Report Share Posted November 15, 2003 Point taken. I still believe the reason she still has the stuff is that they did a shotty job administering the drugs in the hospital. She was day 5 into the treatment before they had the drug level high enough. They would come in an hour after her dose to get a peak or an hour before to get a valley. I loved the nurses but fireballs they weren't. (Some anyway.) Joe > > > Our son has cultured PA twice over the last year and a half and > now > > just > > > came back with small amounts of MRSA, no PA. We have done two > > rounds of 28 > > > day inhaled Tobi. Our docs opinion is try Tobi while he is > > asymptomatic, > > > see if it works. It he begins having issues with PA, then he > would > > move on > > > to other antibiotics, possibly IV. I tend to agree given the > small > > study > > > that said inhaled Tobi is as effective as IVs. Plus, the 28 day > on > > off > > > regimen has been shown in studies to limit significantly > resistance. > > > > > > I listened to some of the CRFI 2003 conference on the > www.Cfri.org > > website > > > (go to the bottom of the home page and there is a link to mp3 > > files). One > > > track in particular was interesting titled 'Latest research'. A > > research > > > doctor talked about his program of using blood tests and CT scans > > in > > > conjunction with swabs to detect PA. He said that you can find > it > > 6-12 > > > months earlier than cultures and treat it quickly and strongly, > > and > > > preventing kids from having to go to the hospital once PA has dug > > in. The > > > last 3 files in the series are parents in our same boat asking > > questions > > > about how to get thier clinics on board. very interesting... > > > > > > PR dad to 3yr wCF, 1yr wocf > > > > > > > > > > > > Sincerely, > > > PR > > > > > > > > > > > > > > > > > > >From: " Joe " <reamsfarm@m...> > > > >Reply-To: cfparents > > > >To: cfparents > > > >Subject: To treat or not to treat > > > >Date: Sat, 15 Nov 2003 15:14:36 -0000 > > > > > > > >Abby's CF team of doctors was split on whether or not to treat > her > > > >recently cultured Pa. The bronch did not grow Pa in July but > she > > has > > > >cultured via throat swab 3 times in a row. They decided to do > one > > > >round of Tobi and Cipro. We don't know what to think. We're > > afraid > > > >if we just keep chasing the Pa around it's going to become > > > >resistant. If anything I would think we would blow it away with > > the > > > >big guns like IV stuff for 2 or 3 weeks like they do in > Denmark. > > If > > > >we leave it alone I'm afraid it will get in the lungs and become > > > >chronic. Last time we did Tobi and Cipro she cultured it again > > just > > > >a few days after the cycle was over. However it was only a two > > week > > > >cycle. (?) > > > > > > > >If anyone has any ideas, let me know. > > > > > > > >Thanks, > > > > > > > >Joe > > > > > > > > > > _________________________________________________________________ > > > MSN Messenger with backgrounds, emoticons and more. > > > http://www.msnmessenger-download.com/tracking/cdp_customize Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2003 Report Share Posted November 16, 2003 ----- Original Message ----- ....when you could pound the hell out of it with IV drugs AND Tobi like the Danes do. Only they use Colistin. Ever seen how low their CF w/Pa numbers are? They must be doing something right. Hi Joe, the danish numbers of Pa-infections have been low long before TOBI came to the market. It is only available in Denmark since 2000. The one thing that the Danes do very right imho is, that they strictly seperate the patients with Pseudomonas and those without. They have different clinic days for positive and negative patients and during hospital stays they have separate wards. And so they have hardly any new pseudomonas infections. Although there is no medical proof it's obvious to me that patient to patient infection is a far greater risk that catching pseudomonas from the environment. Peace Torsten, dad of Fiona 6wcf and Sebastian 6months wocf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 The Danes really have it down! I have heard Neils Hoiby speak many times--many in the audience wished that we could move to Denmark, and take our families with us! Love to all at cfparents! n Rojas Re: Re: To treat or not to treat > > > ----- Original Message ----- > > ...when you could pound the hell out of it with IV drugs > AND Tobi like the Danes do. Only they use Colistin. Ever seen how low > their CF w/Pa numbers are? They must be doing something right. > > Hi Joe, > > the danish numbers of Pa-infections have been low long before TOBI came to > the market. It is only available in Denmark since 2000. > > The one thing that the Danes do very right imho is, that they strictly > seperate the patients with Pseudomonas and those without. They have > different clinic days for positive and negative patients and during hospital > stays they have separate wards. And so they have hardly any new pseudomonas > infections. Although there is no medical proof it's obvious to me that > patient to patient infection is a far greater risk that catching pseudomonas > from the environment. > > Peace > Torsten, dad of Fiona 6wcf and Sebastian 6months wocf > e-mail: torstenkrafft@... > > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.