Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Hi Marie, I have some experience with the inhaled Tobi. It works well , however, my daughter was getting nose bleeds really bad from it. An hour before her Tobi treatment I give her albuteral inhalation and it helps to open up airway, so the Tobi doesn't iritate the airway. Hannah, 22 months has had two central lines one at 5 months, the other at 7 months and also an interjugular line at 22 months. The central line was great, no more veins collapsing/blown. Hannah has very spindly veins and the mere movement of her arm blew veins so the did the central lines, which I thought worked out wonderful. Hope this helps. Jenna, Hannah 22 mowcf, Shamus 6 1/2 nocf, a 4yrs nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Thanks Jenna, I appreciate everything. The doc told us to use the albuterol first and the Tobi after the coughing has subsided. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 My 5 mo old son jeffrey was released from the Hospital today because he kept blowing his iv's so they sent him home with 2 oral antibiotics and Tobi inhaled. Does any one have experience with younger kids on Tobi? I am concerned and want to hear any insights you might have. My other concern is his veins. Should we consider a central line next tune up or is that a bad thing? I have heard great thing about ports but believe he is definitely too young. We see one doc this friday and the other in a week. Help! Marie mom of 3, youngest 5 mo with cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 I would recommend a picc line instead of an IV or port for such a tiny baby. My daughter blows IV's quickly. has also been on Tobi for a long time but she was about 18 months before they put her on it. Are they having 's " peak and trough " monitored? Is he on the full dose? MY daughter was followed closely at first having to have peak and trough blood drawn to monitor how much was in her blood. Too much is not good for them. It effects other organs. has been on a half dose twice a day since they found her levels were too high on the full dose. If they are not checking this ask them to. too much is dangerous. Tobi questions My 5 mo old son jeffrey was released from the Hospital today because he kept blowing his iv's so they sent him home with 2 oral antibiotics and Tobi inhaled. Does any one have experience with younger kids on Tobi? I am concerned and want to hear any insights you might have. My other concern is his veins. Should we consider a central line next tune up or is that a bad thing? I have heard great thing about ports but believe he is definitely too young. We see one doc this friday and the other in a week. Help! Marie mom of 3, youngest 5 mo with cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Traci got her med-port when she was 5 months old. She had no veins left. We tried a central line but it got infected. We also found out at that time she was allergic to Tagaderm(the clear tape that goes over the IV). That first year was all blurred memory now! Lynette Mom to Traci 8w/cf and 12w/ocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 What is difference in picc line and central lines? they have him on one ampule of tobi per day but no blood monitoring. Thank you for info i will ask doc next week at visit. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 How long did the med-port last at that age? I understood that as they grow it has to be changed. I know med -ports work great because my mominlaw has one for chemo and she says no pain at all. This is a plus because he could only keep the ivs in for about 36 hours or so and then he would cry and whine just at the touch. I am very releived to hear that the traumas of year 1 fade to a blur. Thanks again. Marie mom of 3 youngest 5mo wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 As I understand it a central line is placed in the chest, a Picc is placed in the arm but they do pretty much the same thing. My daughter has been doing 1/2 an ampule of Tobi 2x daily for a long time. They had me make sure the amount is spaced at least 8 hrs apart. Good luck Fwd: Tobi questions What is difference in picc line and central lines? they have him on one ampule of tobi per day but no blood monitoring. Thank you for info i will ask doc next week at visit. Marie Quote Link to comment Share on other sites More sharing options...
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