Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 we started tobi two months ago and i was really upset at first because the doc in new brunswick did not know alot about it.matt seems to be getting alot more mucus out since he started tobi. talking to people about tobi seems to help. i hope some one on the message board can anwser your quesstions about it. > >Reply-To: cfparents >To: cfparents >,crataegus > >Subject: TOBI trial >Date: Wed, 30 Oct 2002 01:47:14 +1000 > >hi guys >Living in New Zealand we are a bit behind you all out there and we have >been asked to be in a TOBI trial with Liam, hes only 8 weeks old? Go figure >that. We were told to put him on antibiotics preventaive straigh away and >we havent because we wont to use them when it is nessesary. >What do you think about doing this, is it good to go on this mediciation >so early, we dont really know what to do now? I mean hes not sick, got no >lung troubles yet. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 , I would go for it! Once they get PA it is very hard to get rid of. My granddaughter has been on inhaled Tobi (28 days on/28 days off) for about a year but the PA is still there. However, without that culture she seems fine - no lung probs, no coughing. She is in Southern California. If going on Tobi (avoid IV's) would keep Liam from getting PA I think you'd be ahead of the game. They will keep coming up with new antibiotics in the future. As I understand it, the healthier you can keep them, the better they will be as they get older. Bleu has not been in the hosp. since her dx at 5 mos. She's 2.5 years now. The docotors tell my daughter and her husband that most of the treatments she gets are preventative. She does not look or act " sick " and I think that would be the optimum to hope for at this point. Dixie Grandmother to Bleu, wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 , I would go for it! Once they get PA it is very hard to get rid of. My granddaughter has been on inhaled Tobi (28 days on/28 days off) for about a year but the PA is still there. However, without that culture she seems fine - no lung probs, no coughing. She is in Southern California. If going on Tobi (avoid IV's) would keep Liam from getting PA I think you'd be ahead of the game. They will keep coming up with new antibiotics in the future. As I understand it, the healthier you can keep them, the better they will be as they get older. Bleu has not been in the hosp. since her dx at 5 mos. She's 2.5 years now. The docotors tell my daughter and her husband that most of the treatments she gets are preventative. She does not look or act " sick " and I think that would be the optimum to hope for at this point. Dixie Grandmother to Bleu, wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 , I would go for it! Once they get PA it is very hard to get rid of. My granddaughter has been on inhaled Tobi (28 days on/28 days off) for about a year but the PA is still there. However, without that culture she seems fine - no lung probs, no coughing. She is in Southern California. If going on Tobi (avoid IV's) would keep Liam from getting PA I think you'd be ahead of the game. They will keep coming up with new antibiotics in the future. As I understand it, the healthier you can keep them, the better they will be as they get older. Bleu has not been in the hosp. since her dx at 5 mos. She's 2.5 years now. The docotors tell my daughter and her husband that most of the treatments she gets are preventative. She does not look or act " sick " and I think that would be the optimum to hope for at this point. Dixie Grandmother to Bleu, wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 on 30/10/02 2:47 AM, O'Neill at smoneill@... wrote: > hi guys > Living in New Zealand we are a bit behind you all out there and we have been > asked to be in a TOBI trial with Liam, hes only 8 weeks old? Go figure that. Sounds somewhat bizarre to me - I thought it was not recommended (by the manufacturer) for infants. > We were told to put him on antibiotics preventaive straigh away and we havent > because we wont to use them when it is nessesary. > What do you think about doing this, is it good to go on this mediciation so > early, we dont really know what to do now? I mean hes not sick, got no lung > troubles yet. We discussed this ad infinitum with the CF doctors, and ended up going with the antibiotic (it was an anti-staph one, maybe keflex?) for Sian's first 12 months. The background to the decision went something along the lines of - if we can avoid a hospitalisation in the first year due to a staph infection, then this is a good thing. Mum to Cate 10yrs wocf but deeply adolescent (and in size 8 women's shoes, which is the same size as me!) and Sian 6yrs wcf, asthma, GERD and ADD? Canberra Australia > > > > Quote Link to comment Share on other sites More sharing options...
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