Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 When is Tobi introduced to someone CF? Is it only used if you have an infection? Thanks, Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi Gale, Typically Tobi is prescribed for 30 days on and then 30 days off. When first got it he only used it when he was sick, then they put him on the 30/30 schedule for good. For the last 2 months we've been using Coly-mycin (colistimethate) in the 30 days he is off his Tobi. It's another antibiotic, but kind of a pain due to all the mixing required. Are the doc's suggesting Tobi for Abby? Kelli > When is Tobi introduced to someone CF? Is it only used if you have > an infection? > > Thanks, > Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 My undestanding is it is only used when you culture pseudomonas. > >Reply-To: cfparents >To: cfparents >Subject: Tobi - When to use it >Date: Mon, 30 Jun 2003 21:15:19 -0000 >MIME-Version: 1.0 >X-Originating-IP: 199.62.0.252 >Received: from n31.grp.scd.yahoo.com ([66.218.66.99]) by >mc9-f25.bay6.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Mon, 30 Jun >2003 14:16:50 -0700 >Received: from [66.218.67.198] by n31.grp.scd.yahoo.com with NNFMP; 30 Jun >2003 21:15:25 -0000 >Received: (qmail 15378 invoked from network); 30 Jun 2003 21:15:19 -0000 >Received: from unknown (66.218.66.216) by m5.grp.scd.yahoo.com with QMQP; >30 Jun 2003 21:15:19 -0000 >Received: from unknown (HELO n22.grp.scd.yahoo.com) (66.218.66.78) by >mta1.grp.scd.yahoo.com with SMTP; 30 Jun 2003 21:15:19 -0000 >Received: from [66.218.67.248] by n22.grp.scd.yahoo.com with NNFMP; 30 Jun >2003 21:15:19 -0000 >X-Message-Info: JGTYoYF78jEHjJx36Oi8+Q1OJDRSDidP >X-eGroups-Return: >sentto-104900-45779-1057007725-clog1760=msn.com@... >X-Sender: gale.harris@... >X-Apparently-To: cfparents >Message-ID: <bdq997+ctps (AT) eGroups (DOT) com> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-Yahoo-Profile: danieleverettharris >Mailing-List: list cfparents ; contact >cfparents-owner >Delivered-To: mailing list cfparents >Precedence: bulk >List-Unsubscribe: <mailto:cfparents-unsubscribe > >Return-Path: >sentto-104900-45779-1057007725-clog1760=msn.com@... >X-OriginalArrivalTime: 30 Jun 2003 21:16:50.0757 (UTC) >FILETIME=[EC180F50:01C33F4C] > >When is Tobi introduced to someone CF? Is it only used if you have >an infection? > >Thanks, >Gale > > > >------------------------------------------- >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...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 It is supposed to be used on people with CF over age 6 who have cultured pseudomonas. I have heard its being used on younger kids though. It is not just when you have an infection, its used continually 28 days on/28 days off. love, PS To the mom asking about side effects of Pulmozyme (I'm sorry I can't remember your name), they do say one is hemopyitis (coughing up blood) but its rare and has never done it. She has never had any side effects to it as far as I know. she does say Tobi gives her a sore throat and when she moves out and I no longer control her life she will go off it. We'll see. Tobi - When to use it > When is Tobi introduced to someone CF? Is it only used if you have > an infection? > > Thanks, > Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 as far as I know only with infections such as psudomomas, we used it 2 x a day for 28 days when got P.A. last aug then again in Jan. Amy mom to 2 yrs old w/ cf Tobi - When to use it When is Tobi introduced to someone CF? Is it only used if you have an infection? Thanks, Gale ------------------------------------------- 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...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 HI Gale, It depends on the doc. My daughter is four and has been on Tobi every other month since before she turned 2. (1/2 dose 2x daily) She has always cultured pseudomonas (until her culture in October when they didn't see it) She hasn't been put on it for a flare up only but I have heard of other kids at her CF center who are only put on it for flare ups. Tobi - When to use it When is Tobi introduced to someone CF? Is it only used if you have an infection? Thanks, Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Abby doesn't use Tobi yet and I was just wondering why. They did a throat culture on her yesterday, so we will know in a few days if she has any bugs. She seems good and we aren't expecting anything to culture. Gale > > When is Tobi introduced to someone CF? Is it only used if you have > > an infection? > > > > Thanks, > > Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Lexie started using TOBI and the vest a couple of years ago. She did have Pseudomonas when she started the TOBI. She has done very well since then and no hospital stays since 3 y/o for a urinary tract infection. Our doctor says that " tune-ups " are not necessary if Lexie is on TOBI, although I know others probably disagree. I'm not sure what I think about that, but she is doing very well. I think I'm going to push for Pulmonzyme on Monday when we go to clinic though just to see if that would improve things even more. , Mommy to Lexie, w/cf, 9 y/o on July 4th! > When is Tobi introduced to someone CF? Is it only used if you have > an infection? > > Thanks, > Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Our Abby (10mos.) cultures non-mucoid Pa (along with other less concerning bugs)and has had 3 rounds of Tobi coupled with other drugs which haven't eradicated it. She also is very well - doesn't cough, 90th percentile in wt., almost walking and stronger than our non-cf girls were at this age. However our docs want to try and eradicate the Pa so they have scheduled a bronchoscopy to narrow the scope, finding where the bug is and exactly how to target it - what drugs - etc. Your Abby probably has some sort of bugs in there so don't be frightened because since she's well they're likely not virulent or actively causing an infection and are also probably very sensitive to antibiotics should an infection occur. The reason they want to eradicate this Pa in our Abby is because it's a bad bug if it becomes " mucoid " and usually can't be completely killed then - although it can be held in check. Joe (Dad of Kelsi,6 Chloe,2 and Abby, 10mos.w/cf) > > > When is Tobi introduced to someone CF? Is it only used if you > have > > > an infection? > > > > > > Thanks, > > > Gale Quote Link to comment Share on other sites More sharing options...
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