Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 In a message dated 10/27/2002 5:45:09 PM Central Standard Time, sjcpd33@... writes: > By the way I have a question for the rest of the group. When you are doing > the TOBI, how often do you do it and how much each time? > > > We do the Tobi in the nebulizer two times a day and it usually takes around 30 to 40 minutes for them to do it. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 In a message dated 10/27/2002 5:45:09 PM Central Standard Time, sjcpd33@... writes: > By the way I have a question for the rest of the group. When you are doing > the TOBI, how often do you do it and how much each time? > > > We do the Tobi in the nebulizer two times a day and it usually takes around 30 to 40 minutes for them to do it. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hope you are not getting sick of me. I have gone from not posting too much to posting every few days. In any case, Shaelin had a CT of his sinuses last week as he has been chronically congested and his x-ray showed that he was totally blocked up. The CT essentially confirmed the x-rays results and we are awaiting an appointment with an ENT specialist to decide the best course of action. He has been on Ceftin for the past 5 weeks which obviously has done little. The options that are being decided is hospitalizing him for IV antibiotics to see if the sinuses clear vs surgery to scrape his sinuses. If we start with the antibiotics and it doesn't work, he will probably end up with a long hospital course and may need surgery anyway. Also, does anyone have experience with IV therapy at home with children as young as Shaelin. I was told that he would need to be hospitalized until he is older. Thanks again. You guys are great. Jeanne (foster mom to 20 mos wcf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 My daughter had home Iv's when she was less than a year. That was about five years ago. Good luck. Lori in Florida Probable hospitalization Hope you are not getting sick of me. I have gone from not posting too much to posting every few days. In any case, Shaelin had a CT of his sinuses last week as he has been chronically congested and his x-ray showed that he was totally blocked up. The CT essentially confirmed the x-rays results and we are awaiting an appointment with an ENT specialist to decide the best course of action. He has been on Ceftin for the past 5 weeks which obviously has done little. The options that are being decided is hospitalizing him for IV antibiotics to see if the sinuses clear vs surgery to scrape his sinuses. If we start with the antibiotics and it doesn't work, he will probably end up with a long hospital course and may need surgery anyway. Also, does anyone have experience with IV therapy at home with children as young as Shaelin. I was told that he would need to be hospitalized until he is older. Thanks again. You guys are great. Jeanne (foster mom to 20 mos wcf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Does anyone else use half the vial? We haven't done TOBI in a long time but when we did we used half. Lori in Florida Re: Probable hospitalization In a message dated 10/27/2002 7:16:37 PM Eastern Standard Time, gdattig5@... writes: > We do the Tobi in the nebulizer two times a day and it usually takes around > 30 to 40 minutes for them to do it. Deb A > > Yes, and I want to add 28 days on and 28 days off. Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Does anyone else use half the vial? We haven't done TOBI in a long time but when we did we used half. Lori in Florida Re: Probable hospitalization In a message dated 10/27/2002 7:16:37 PM Eastern Standard Time, gdattig5@... writes: > We do the Tobi in the nebulizer two times a day and it usually takes around > 30 to 40 minutes for them to do it. Deb A > > Yes, and I want to add 28 days on and 28 days off. Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you ready for this - TOBI after their medication! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Yes, we did home ivs with Mallory a number of times when she was that young, including tobra, gent, and fortaz (either fortaz and gent or fortaz and tobra) At the time we had picc lines, eventually she got a port. We also had to do home iv fluids once for two weeks when Mallory caught a nasty rotavirus whenshe was hospitalized with RSV..she came home and that night ended up on iv fluids and the ped kept her home on the fluids because she had already been hospitalized about three weeks. For the fluids, we used a peripheral and they lasted about a week, but peripherals aren't great for tobra. Hope this helps. Jen Mommy of 7, 3 with CF > Hope you are not getting sick of me. I have gone from not posting too > much to posting every few days. > In any case, Shaelin had a CT of his sinuses last week as he has been > chronically congested and his x-ray showed that he was totally > blocked up. The CT essentially confirmed the x-rays results and we > are awaiting an appointment with an ENT specialist to decide the best > course of action. He has been on Ceftin for the past 5 weeks which > obviously has done little. The options that are being decided is > hospitalizing him for IV antibiotics to see if the sinuses clear vs > surgery to scrape his sinuses. If we start with the antibiotics and > it doesn't work, he will probably end up with a long hospital course > and may need surgery anyway. > Also, does anyone have experience with IV therapy at home with > children as young as Shaelin. I was told that he would need to be > hospitalized until he is older. > Thanks again. You guys are great. > Jeanne (foster mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 --- , we do the Tobi twice a day and its a whole vial. He put her 28 days on 28 off. She also does Pulmozyme once a day(Dnase). Margo In cfparents@y..., " Keslar " wrote: > My son, , was six months old when he had his first sinus surgery and > he was on home IV's. It is simple to do and probably even more so for you > since you are already a nurse and have some experience in that field. He was > hospitalized again at 20months for periorbital cellulitus (same at six > months). And again sent home on IV. This past January 17-February 14 he had > three sinus surgeries (all to no avail mind you) but wasn't on anything > except singulair. It semed to help keep him open a little better. He is > again back on Tobi this winter to try and prevent any flare ups and try and > deal with his PA. His CF drs say that he is a unique case because of the > periorbital at six months of age and he has the sinuses of an older kid with > cf. > > By the way I have a question for the rest of the group. When you are doing > the TOBI, how often do you do it and how much each time? > > > > > > > > > > >From: " fostercf2002 " > >Reply-To: cfparents@y... > >To: cfparents@y... > >Subject: Probable hospitalization > >Date: Sun, 27 Oct 2002 22:40:30 -0000 > > > >Hope you are not getting sick of me. I have gone from not posting too > >much to posting every few days. > >In any case, Shaelin had a CT of his sinuses last week as he has been > >chronically congested and his x-ray showed that he was totally > >blocked up. The CT essentially confirmed the x-rays results and we > >are awaiting an appointment with an ENT specialist to decide the best > >course of action. He has been on Ceftin for the past 5 weeks which > >obviously has done little. The options that are being decided is > >hospitalizing him for IV antibiotics to see if the sinuses clear vs > >surgery to scrape his sinuses. If we start with the antibiotics and > >it doesn't work, he will probably end up with a long hospital course > >and may need surgery anyway. > >Also, does anyone have experience with IV therapy at home with > >children as young as Shaelin. I was told that he would need to be > >hospitalized until he is older. > >Thanks again. You guys are great. > >Jeanne (foster mom to 20 mos wcf) > > > > > _________________________________________________________________ > Unlimited Internet access for only $21.95/month. Try MSN! > http://resourcecenter.msn.com/access/plans/2monthsfree.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 In a message dated 10/27/2002 9:20:35 PM Central Standard Time, ROSEMARY3FOR3wCF@... writes: > Yes, and I want to add 28 days on and 28 days off We don't do 28 days on and 28 days off. We do the 28 days and when they culture psuedomonas again then they put them back on the Tobi. And so far my oldest has been on it since Oct of last year. We are almost done too and we go in for throat cultures in about a week so keep your fingers cross that she finally got rid of it. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 That's us too. That is why I asked the question about how much people have done. Last year it was just the one vial once a day and now he is on two vials a day. > >Reply-To: cfparents >To: cfparents > >Subject: Re: Probable hospitalization >Date: Sun, 27 Oct 2002 22:50:48 -0500 > >Does anyone else use half the vial? We haven't done TOBI in a long time >but when we did we used half. > >Lori in Florida > Re: Probable hospitalization > > > In a message dated 10/27/2002 7:16:37 PM Eastern Standard Time, > gdattig5@... writes: > > > We do the Tobi in the nebulizer two times a day and it usually takes >around > > 30 to 40 minutes for them to do it. Deb A > > > > > > Yes, and I want to add 28 days on and 28 days off. > Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I > coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are >you > ready for this - TOBI after their medication! > > > 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.