Weaning off nebs?

[Mommafirst]

Hi Em,

We started Albuterol nebs when Alyssa had a upper respiratory infection last fall. We stayed on it 2 times per day when healthy and 3 times per day when ill. In January I asked our pulm if there was anyway to make the treatments easier (more neb in the air than in her lungs no matter how much we fought). He gave us an inhaler for albuterol instead. Now she does two puffs in the am and pm before CPT. I feel good that she still gets the meds, and even better that we aren't fighting it -- its soooo much easier timewise. Some day we'll have to go back to the nebs, like when they decide she needs something besides albuterol nebbed. But for now, they assured me, that the inhaler is perfectly the same dosing as she was getting and it does the same thing.

I don't think I'd want to wean her off a bronchiodialator at all, it helps with the physio and prevention seems to be the name of the game.

 

[sdelorenzo]

Emily,
When my kids get a respiratory infection, it can take weeks to get over the coughing. Both of my kids caught a virus four weeks ago. After being on oral antibotics for a few weeks, the the coughing has stopped thankfully a few days ago. Even if they don't have cf the coughing can last a while. It is better to use openex until the coughing is done. Some stay on openex while others like my son only use it when they are sick. But he still does the vest, tobi and pulmozyme. It just depends on the doctor.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Emily,
When my kids get a respiratory infection, it can take weeks to get over the coughing. Both of my kids caught a virus four weeks ago. After being on oral antibotics for a few weeks, the the coughing has stopped thankfully a few days ago. Even if they don't have cf the coughing can last a while. It is better to use openex until the coughing is done. Some stay on openex while others like my son only use it when they are sick. But he still does the vest, tobi and pulmozyme. It just depends on the doctor.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Emily,
When my kids get a respiratory infection, it can take weeks to get over the coughing. Both of my kids caught a virus four weeks ago. After being on oral antibotics for a few weeks, the the coughing has stopped thankfully a few days ago. Even if they don't have cf the coughing can last a while. It is better to use openex until the coughing is done. Some stay on openex while others like my son only use it when they are sick. But he still does the vest, tobi and pulmozyme. It just depends on the doctor.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[Foody]

I believe it can take a while for the lungs to return to normal after RSV. Plus an infant's ability to clear and cough is very different from an older child or adult. They can stay junky longer with or without CF. If it takes 3 weeks to get through the RSV virus without CF, I would add another week or 2 to that. I would think the mucus would clear out by 6 weeks and you could be done with nebs. It took about 4 weeks from Ben to clear RSV and this was without nebs.

I disagree with Amy. RSV is nasty for tiny ones and it takes time for them to clear it all out. It does not mean what she is going through is necessarily CF related.

If a bronciodialator (sorry about the spelling) is being used to open the airway, it makes sense to me that there would be an adjustment period then the nebs are stopped. Suddenly the airways are not receiving the help they were getting and they need to being reacting and opening on their own. I imagine this is more dramatic in the developing lungs of an infant.

I hope she clears all of this out very soon. I know how nerve wracking it is to listen to is all.

 

[Foody]

I believe it can take a while for the lungs to return to normal after RSV. Plus an infant's ability to clear and cough is very different from an older child or adult. They can stay junky longer with or without CF. If it takes 3 weeks to get through the RSV virus without CF, I would add another week or 2 to that. I would think the mucus would clear out by 6 weeks and you could be done with nebs. It took about 4 weeks from Ben to clear RSV and this was without nebs.

I disagree with Amy. RSV is nasty for tiny ones and it takes time for them to clear it all out. It does not mean what she is going through is necessarily CF related.

If a bronciodialator (sorry about the spelling) is being used to open the airway, it makes sense to me that there would be an adjustment period then the nebs are stopped. Suddenly the airways are not receiving the help they were getting and they need to being reacting and opening on their own. I imagine this is more dramatic in the developing lungs of an infant.

I hope she clears all of this out very soon. I know how nerve wracking it is to listen to is all.

 

[Foody]

I believe it can take a while for the lungs to return to normal after RSV. Plus an infant's ability to clear and cough is very different from an older child or adult. They can stay junky longer with or without CF. If it takes 3 weeks to get through the RSV virus without CF, I would add another week or 2 to that. I would think the mucus would clear out by 6 weeks and you could be done with nebs. It took about 4 weeks from Ben to clear RSV and this was without nebs.

I disagree with Amy. RSV is nasty for tiny ones and it takes time for them to clear it all out. It does not mean what she is going through is necessarily CF related.

If a bronciodialator (sorry about the spelling) is being used to open the airway, it makes sense to me that there would be an adjustment period then the nebs are stopped. Suddenly the airways are not receiving the help they were getting and they need to being reacting and opening on their own. I imagine this is more dramatic in the developing lungs of an infant.

I hope she clears all of this out very soon. I know how nerve wracking it is to listen to is all.

 

[kayleesgrandma]

Heather, it was good to see you talking about the inhaler. Kaylee's doctor put her on one also. She doesn't use nebs, they said she doesn't need them unless congested. So we use the inhaler with albuterol and a steriod. She loves the little duckey!

 

[kayleesgrandma]

Heather, it was good to see you talking about the inhaler. Kaylee's doctor put her on one also. She doesn't use nebs, they said she doesn't need them unless congested. So we use the inhaler with albuterol and a steriod. She loves the little duckey!

 

[kayleesgrandma]

Heather, it was good to see you talking about the inhaler. Kaylee's doctor put her on one also. She doesn't use nebs, they said she doesn't need them unless congested. So we use the inhaler with albuterol and a steriod. She loves the little duckey!

 

[Emily65Roses]

I've been on nebs every day of my life since I was 9 (and I would've been on them sooner, but Pulmozyme wasn't out until I was 9). No one ever mentioned weaning me off anything. Part of life with CF is nebs. That's just how it is.

 

[Emily65Roses]

I've been on nebs every day of my life since I was 9 (and I would've been on them sooner, but Pulmozyme wasn't out until I was 9). No one ever mentioned weaning me off anything. Part of life with CF is nebs. That's just how it is.

 

[Emily65Roses]

I've been on nebs every day of my life since I was 9 (and I would've been on them sooner, but Pulmozyme wasn't out until I was 9). No one ever mentioned weaning me off anything. Part of life with CF is nebs. That's just how it is.

 

[lemonstolemonade]

Thank you everyone.

We're back on them 4 times a day. She's not sounding much better, but isn't sounding any worse. I don't mind the work, but it is hard to get all of the stars aligned so that I have a moment when Abby's sleeping to do it. I just can't figure out what to do with my 2 year old to keep her out of trouble while I'm taking care of Abby! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I can't do much more pre-school proofing to the house! Any suggestions?

Em

 

[lemonstolemonade]

Thank you everyone.

We're back on them 4 times a day. She's not sounding much better, but isn't sounding any worse. I don't mind the work, but it is hard to get all of the stars aligned so that I have a moment when Abby's sleeping to do it. I just can't figure out what to do with my 2 year old to keep her out of trouble while I'm taking care of Abby! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I can't do much more pre-school proofing to the house! Any suggestions?

Em

 

[lemonstolemonade]

Thank you everyone.

We're back on them 4 times a day. She's not sounding much better, but isn't sounding any worse. I don't mind the work, but it is hard to get all of the stars aligned so that I have a moment when Abby's sleeping to do it. I just can't figure out what to do with my 2 year old to keep her out of trouble while I'm taking care of Abby! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I can't do much more pre-school proofing to the house! Any suggestions?

Em

 

[Ratatosk]

Let her hang out with you while you do nebs. Maybe get a portable DVD player and let her watch her favorite movie. Does she have any of those little people movies or books that go with the little people playsets?

Toddlers! I ran to the kitchen last night during nebs/vest to get DS some chips and apple juice and it took me twice as long 'cuz he kept yelling "mommy" in that sharp scolding toddler way they seem to have.

 

[Ratatosk]

Let her hang out with you while you do nebs. Maybe get a portable DVD player and let her watch her favorite movie. Does she have any of those little people movies or books that go with the little people playsets?

Toddlers! I ran to the kitchen last night during nebs/vest to get DS some chips and apple juice and it took me twice as long 'cuz he kept yelling "mommy" in that sharp scolding toddler way they seem to have.

 

[Ratatosk]

Let her hang out with you while you do nebs. Maybe get a portable DVD player and let her watch her favorite movie. Does she have any of those little people movies or books that go with the little people playsets?

Toddlers! I ran to the kitchen last night during nebs/vest to get DS some chips and apple juice and it took me twice as long 'cuz he kept yelling "mommy" in that sharp scolding toddler way they seem to have.

 

[usedtobeinca]

We haven't had much or any success in weaning off nebs. Twice our CF docs have mentioned that Thomas sounded clear and was healthy enough that we could discontinue pulmozyme - but still do cpt and use albuterol. Both times he became sick within a week of that decision (bad colds) and we made the executive decision to put him back on pronto. He sounded clear at his last clinic appt but no suggestion was made to discontinue the nebs that time.

Maybe discontinuing nebs would work better outside the cold/flu season - but we expect that we'll always be integrating it into our routine. That's ok though, its fun together time with our little man.