We will be starting Emily on pulmozyme next week. She's developed a cough over the past few weeks and her latest chest x-ray showed some cloudiness on the left side. I'm curious if anyone had any trouble with pulmozyme in an infant. I know the TOBI tastes terrible, anyone know about pulmozyme? Also, we'll be starting pulmozyme during an "on" month for TOBI. Any interactions or anything to watch for there?
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starting pulmozyme
- Thread starter izemmom
- Start date
If you have been doing Tobi, Pulmozyme will be a breeze !! It doesn't have nearly the bad taste that Tobi does. It does have a taste to it but not bad.
My daughter is 17 years old and has only done Tobi once, but no there are not interactions to watch for that I am aware of - plus I'm sure the doctors wouldn't prescribe it together if there was.
I would only recommend you do the Pulmozyme before the Tobi -- to my knowledge the order of things is supposed to be:
Albuteral (or fast acting bronchodilator)
Flovent (or long acting bronchodilator)
Pulmozyme
Airway clearance ( CPT )
Tobi
I don't know if you do the bronchodilators or not, but the idea behind the order is to open the airways, thin the mucus (pulmozyme), clear the airways, get the antibiotic in.
My daughter just said she thought the order is supposed to be
bronchodilators
Airway clearance
Pulmozyme
Tobi
So now I'm not sure who is remembering correctly, but I KNOW I remember the nurse saying the idea was to do everything before the Tobi so it could get in and stay in the lungs since it is the antibiotic.
My daughter is 17 years old and has only done Tobi once, but no there are not interactions to watch for that I am aware of - plus I'm sure the doctors wouldn't prescribe it together if there was.
I would only recommend you do the Pulmozyme before the Tobi -- to my knowledge the order of things is supposed to be:
Albuteral (or fast acting bronchodilator)
Flovent (or long acting bronchodilator)
Pulmozyme
Airway clearance ( CPT )
Tobi
I don't know if you do the bronchodilators or not, but the idea behind the order is to open the airways, thin the mucus (pulmozyme), clear the airways, get the antibiotic in.
My daughter just said she thought the order is supposed to be
bronchodilators
Airway clearance
Pulmozyme
Tobi
So now I'm not sure who is remembering correctly, but I KNOW I remember the nurse saying the idea was to do everything before the Tobi so it could get in and stay in the lungs since it is the antibiotic.
We started pulmozyme 6 months ago -- ds is 2 1/2 and it takes about 5-10 minutes. If DS isn't on Tobi, we do it during his middle treatment after his albuterol and atrovent. If he's on Tobi, we do it before we go to bed after his cpt and nebs. And at his last CF clinic the RT said he thought the one before bed was probably best 'cuz it stays in the lungs all night and has a chance to work over night. Don't know if it makes a difference or not.
Liza
Liza
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>
Hi
Either way, the TOBI goes last, after the pulmozyme.
The pulmozyme is WAY faster than TOBI too!
Alyssa, My kids have been on and off pulmozyme. We don't see a difference. Do your kids notice anything?
Thanks, Jane</end quote></div>
Jane,
My son has never used it. My daughter has been on it every day since she was diagnosed at age 13. We have never gone off of it to tell for sure, but she really feels it helps -- she believes it does thin the mucus and helps to cut down on the possibility of getting infections.
Hi
Either way, the TOBI goes last, after the pulmozyme.
The pulmozyme is WAY faster than TOBI too!
Alyssa, My kids have been on and off pulmozyme. We don't see a difference. Do your kids notice anything?
Thanks, Jane</end quote></div>
Jane,
My son has never used it. My daughter has been on it every day since she was diagnosed at age 13. We have never gone off of it to tell for sure, but she really feels it helps -- she believes it does thin the mucus and helps to cut down on the possibility of getting infections.
My son has been on pulmozyme since dx at 6 weeks. Our homecare instructions say xopanex then cpt and pulmazyme before bed no cpt .I like to wait till he falls asleep then go in and give pulmazyme. He doesnt wake up and he is still so I know he gets it all. Our doc said hold mask to face it does little good blowing every where also its an enzyme so it burns eyes a little so hold (baby pari) mask on the face. We were also told its best to sit in lungs overnight.
regarding the thinning of mucus--i have noticed that the hypertonic saline does it a lot better than anything i have ever been on, the best part is is that it's just saltwater, no drugs. i have had numerous occassions of blood spotting while using pulmozyme and tobi, so i try to avoid those for myself.
We were wondering about HS, but the local pulmonologist told us that he wouldn't consider it until DS could expectorate something. But I've heard from some people who've tried HS, that prior to that they were rarely able to cough up anything. Figure we'll ask the CF doctor at our next clinic. The pulmonologist tends to put all his patients on the same drugs just because and not necessarily based on need.
I really have a tough time telling if there's a difference with DS using pulmozyme or not. Guess it doesn't hurt anything, but sometimes, I just get tired of adding more and more treatments, more and more time. It's to keep ds healthy, but I always feel a little overwhelmed when we start something new. Eventually it'll all become habit, second nature, but it just takes me a little while to adjust - suppose it's cuz it reminds me that DS really DOES have CF.
Liza
I really have a tough time telling if there's a difference with DS using pulmozyme or not. Guess it doesn't hurt anything, but sometimes, I just get tired of adding more and more treatments, more and more time. It's to keep ds healthy, but I always feel a little overwhelmed when we start something new. Eventually it'll all become habit, second nature, but it just takes me a little while to adjust - suppose it's cuz it reminds me that DS really DOES have CF.
Liza