Ratatosk
10-05-2005, 05:13 PM
Sure this has been talked about before. DS just got prescribed pulmozyme. His pulmonologist said all his patients who are on Tobi and have cultured pseudamonas A are all on it.
Just wondered about other people's experiences with it. When they feel the best time of the day is to adminster it....
dannysmom
10-05-2005, 08:55 PM
As you might remember my son was diagnosed right after birth because of meconium ileus. He has been on Pulmozyme since day one. His pulmonologist feels that its beneficial for everyone to be on. He has never used Tobi and never a positive throat culture. We use the pulmozyme before his night treatment because we have a little bit more time then.
Ratatosk
10-06-2005, 09:46 AM
We do albuterol and atrovent nebs with CPT three times a day. Then if he's on Tobi we do that at 6 a.m. and 5:30 p.m. Literature says to do nebs with CPT, then Pulmozyme and then tobi. But if we did that, the poor kid wouldn't get dinner until 7-7:30. CPT takes about 20 minutes and tobi takes another 25 minutes. Noticed the pulmzyme takes about 10-15 minutes.
dannysmom
10-06-2005, 10:44 AM
We do Albuterol, Pulmozyme and then CPT at night. In the morning we do just albuterol and CPT. We only use the albuterol with a spacer so its like 2 minutes. We have never done any of the other meds you have listed. Bet it feels like thats all you do! Maybe you could talk to your dr about getting the vest so it would free up some time for you. I don't know if you can do nebs while using the vest? And yes, the pulmozyme takes about 10-15 minutes.
Ratatosk
10-06-2005, 10:56 AM
We've asked about the vest. His one doctor wants us to wait until he's closer to 4. Local ones have told us we could probably start when he's about the age he is know. 2 1/2. But with Tobi and his other nebs, we figure one of us needs to be around to supervise him anyway 'cuz he rarely holds onto the nebs himself unless we're on the road and have him strapped in his car seat.
The CPT isn't that bad. I get up at 6 and he sleeps thru that treatment. THen I get ready for work while DH doses and if he's on tobi, he'll hold the neb cup at the same time. Then we do CPT right away after work and if we have tobi, he watches a dvd. Then the late night one is at 10 and he sleeps thru that one too. When he isn't feeling well, we try to throw in an extra treatment either during the day or middle of the night. His doctor in the city stresses proper lung care being the most important aspect of his care and "beating any coughs" out of him.
swimfast989
10-15-2005, 10:23 AM
As for the best time of day to do it, my doctor says that doing it in the morning is the best, that way he can cough up the loosened gunk during the day, rather than coughing it up all night and not getting enough sleep.
Ratatosk
10-17-2005, 10:42 AM
I'm still having a tough time with his being on this. So far his CF symptoms have been sinus -- he rarely coughs -- only with post nasal drip or if he's caught a cold. Plus he's not even three yet and the literature says studies have been inconclusive on children under that age of 5. I really can't see a difference so far. Nothing has changed. I'm planning to ask his other doctor about it during our next appointment so see what he suggests.
princess526
10-17-2005, 09:56 PM
I have been on Pulmozyme for about 8 years now and I do feel and see a difference. It really does help with thin the mucus in the lungs. Best results were when i used it after a bronchialdiolator, such as albuterol and CPT. Also, when i have sinus problems and colds, I use my mask with the neb so i can inhale it through my lung and my sinus, and it helps. If you have any further questions about it I would be happy to answer them if i can. Good Luck!