Weaning off nebs?

L

lemonstolemonade

Guest
I usually don't question my clinic; however, this time I'm a little confused. Abby sounded great at her clinic appointment last week and we were told by the pedi pulmonologist that we saw (who we had never seen before) to wean her off the nebs that her pedi put her on because of the RSV.

We did. from 4 a day to 3 a day to 2 a day to 1 a day and then congestion city hit.

She sounds HORRIBLE and I have (after speaking to her pedi, not the clinic) put her back on her Xopenex 4 times a day. When she's on them, she sounds clear. When she's not, she's congested and starts down the "I'm looking like and sounding like and feeling like I'm getting RSV" track again.

I know as a mommy, I have to do what is right in my gut for my child.

In your experiences, what has been the "success rate" for getting a 6 month old off nebs for any extended period of time? Are we looking at Xopenex/Nebs forever now that we've started them? I couldn't get a straight answer from the clinic pulmonologist and my pedi just doesn't pretend to know either way....and I'm greatful that he doesn't just feed me a line to get me to stop asking questions.

Any thoughts?

Thanks in advance.

Emily
 
L

lemonstolemonade

Guest
I usually don't question my clinic; however, this time I'm a little confused. Abby sounded great at her clinic appointment last week and we were told by the pedi pulmonologist that we saw (who we had never seen before) to wean her off the nebs that her pedi put her on because of the RSV.

We did. from 4 a day to 3 a day to 2 a day to 1 a day and then congestion city hit.

She sounds HORRIBLE and I have (after speaking to her pedi, not the clinic) put her back on her Xopenex 4 times a day. When she's on them, she sounds clear. When she's not, she's congested and starts down the "I'm looking like and sounding like and feeling like I'm getting RSV" track again.

I know as a mommy, I have to do what is right in my gut for my child.

In your experiences, what has been the "success rate" for getting a 6 month old off nebs for any extended period of time? Are we looking at Xopenex/Nebs forever now that we've started them? I couldn't get a straight answer from the clinic pulmonologist and my pedi just doesn't pretend to know either way....and I'm greatful that he doesn't just feed me a line to get me to stop asking questions.

Any thoughts?

Thanks in advance.

Emily
 
L

lemonstolemonade

Guest
I usually don't question my clinic; however, this time I'm a little confused. Abby sounded great at her clinic appointment last week and we were told by the pedi pulmonologist that we saw (who we had never seen before) to wean her off the nebs that her pedi put her on because of the RSV.

We did. from 4 a day to 3 a day to 2 a day to 1 a day and then congestion city hit.

She sounds HORRIBLE and I have (after speaking to her pedi, not the clinic) put her back on her Xopenex 4 times a day. When she's on them, she sounds clear. When she's not, she's congested and starts down the "I'm looking like and sounding like and feeling like I'm getting RSV" track again.

I know as a mommy, I have to do what is right in my gut for my child.

In your experiences, what has been the "success rate" for getting a 6 month old off nebs for any extended period of time? Are we looking at Xopenex/Nebs forever now that we've started them? I couldn't get a straight answer from the clinic pulmonologist and my pedi just doesn't pretend to know either way....and I'm greatful that he doesn't just feed me a line to get me to stop asking questions.

Any thoughts?

Thanks in advance.

Emily
 
R

Ratatosk

Administrator
Staff member
Seems strange they use the phrase "weaning off nebs". I can see if it's something like a steroid, where you might need a gradual reduction rather than going cold turkey. But isn't Xopenex just a form of albuterol -- a bronchiodialator.

Can't help you with how long as DS has been on albuterol with atrovent nebs 3-4 times a day with CPT since he was a few days old as a preventative.
 
R

Ratatosk

Administrator
Staff member
Seems strange they use the phrase "weaning off nebs". I can see if it's something like a steroid, where you might need a gradual reduction rather than going cold turkey. But isn't Xopenex just a form of albuterol -- a bronchiodialator.

Can't help you with how long as DS has been on albuterol with atrovent nebs 3-4 times a day with CPT since he was a few days old as a preventative.
 
R

Ratatosk

Administrator
Staff member
Seems strange they use the phrase "weaning off nebs". I can see if it's something like a steroid, where you might need a gradual reduction rather than going cold turkey. But isn't Xopenex just a form of albuterol -- a bronchiodialator.

Can't help you with how long as DS has been on albuterol with atrovent nebs 3-4 times a day with CPT since he was a few days old as a preventative.
 
N

NoExcuses

New member
Your kid has CF and is having lung issues.

Nebs will help.

This is normal and nothing you should worry about. This is just reality.
 
N

NoExcuses

New member
Your kid has CF and is having lung issues.

Nebs will help.

This is normal and nothing you should worry about. This is just reality.
 
N

NoExcuses

New member
Your kid has CF and is having lung issues.

Nebs will help.

This is normal and nothing you should worry about. This is just reality.
 
R

Rebjane

Super Moderator
Emily,

My daugher has been on her nebs for a while since she was about 2 . Our CF doc likes her to do the albuterol before her VEST to open the airway(albuterol is a bronchodilator), he says it also can dilate the tiny cilia in the airway to promote them to remove mucus(hope I'm getting this right). So my daughter has been on her albuterol/pulmocort since she was about 2 and for us this is part of our preventative care.
 
R

Rebjane

Super Moderator
Emily,

My daugher has been on her nebs for a while since she was about 2 . Our CF doc likes her to do the albuterol before her VEST to open the airway(albuterol is a bronchodilator), he says it also can dilate the tiny cilia in the airway to promote them to remove mucus(hope I'm getting this right). So my daughter has been on her albuterol/pulmocort since she was about 2 and for us this is part of our preventative care.
 
R

Rebjane

Super Moderator
Emily,

My daugher has been on her nebs for a while since she was about 2 . Our CF doc likes her to do the albuterol before her VEST to open the airway(albuterol is a bronchodilator), he says it also can dilate the tiny cilia in the airway to promote them to remove mucus(hope I'm getting this right). So my daughter has been on her albuterol/pulmocort since she was about 2 and for us this is part of our preventative care.
 
R

Ratatosk

Administrator
Staff member
Last week I was talking with another mom to a cfer, whose child wasn't diagnosed until she was 18 months. When her doctor suggested a sweat test, she thought he was crazy. Her child had constipation issues, not respiratory issues. Her child had gotten RSV at 8 month, but really didn't have any health problems. She was immediately referred to a CF center. It's since been determined thru broncoscopy, that she did have inflammation -- was prescribed the vest, has had a few infections since then, cultured staph.

Our doctor explained it to us that CFers are born with normal lungs; however, with infections and over time, the disease progresses and the lungs will eventually become affected. So CPT and nebs 3-4 times a day -- now vest. Because at the time DS didn't have lung issues, DH and I joked early on that should the CF diagnosis be wrong -- that he'd have the healthiest lungs around.
 
R

Ratatosk

Administrator
Staff member
Last week I was talking with another mom to a cfer, whose child wasn't diagnosed until she was 18 months. When her doctor suggested a sweat test, she thought he was crazy. Her child had constipation issues, not respiratory issues. Her child had gotten RSV at 8 month, but really didn't have any health problems. She was immediately referred to a CF center. It's since been determined thru broncoscopy, that she did have inflammation -- was prescribed the vest, has had a few infections since then, cultured staph.

Our doctor explained it to us that CFers are born with normal lungs; however, with infections and over time, the disease progresses and the lungs will eventually become affected. So CPT and nebs 3-4 times a day -- now vest. Because at the time DS didn't have lung issues, DH and I joked early on that should the CF diagnosis be wrong -- that he'd have the healthiest lungs around.
 
R

Ratatosk

Administrator
Staff member
Last week I was talking with another mom to a cfer, whose child wasn't diagnosed until she was 18 months. When her doctor suggested a sweat test, she thought he was crazy. Her child had constipation issues, not respiratory issues. Her child had gotten RSV at 8 month, but really didn't have any health problems. She was immediately referred to a CF center. It's since been determined thru broncoscopy, that she did have inflammation -- was prescribed the vest, has had a few infections since then, cultured staph.

Our doctor explained it to us that CFers are born with normal lungs; however, with infections and over time, the disease progresses and the lungs will eventually become affected. So CPT and nebs 3-4 times a day -- now vest. Because at the time DS didn't have lung issues, DH and I joked early on that should the CF diagnosis be wrong -- that he'd have the healthiest lungs around.
 
M

mneville

Guest
Aidan also started nebs at 8 days old prior to any lung issues. We are all about prevention and it is better to start young. He just knows at 2 years old that he does three nebs a day with an hour of the VEST(in two sittings)- no big deal.

He does Xopenex to open the airways with each VEST session and a Pulmozyne at the night VEST session. We actually do more than our CF center recommends- they say one VEST session is fine a day. After seeing Warwick, we choose to do two. We work our schedule out so those VESTs and nebs always fit in. We take it wherever we need to- it doesn't hold us back really. Although I would love to be able to take a break on Christmas Eve and things like that! But we don't and Aidan is doing great.

Megan
 
M

mneville

Guest
Aidan also started nebs at 8 days old prior to any lung issues. We are all about prevention and it is better to start young. He just knows at 2 years old that he does three nebs a day with an hour of the VEST(in two sittings)- no big deal.

He does Xopenex to open the airways with each VEST session and a Pulmozyne at the night VEST session. We actually do more than our CF center recommends- they say one VEST session is fine a day. After seeing Warwick, we choose to do two. We work our schedule out so those VESTs and nebs always fit in. We take it wherever we need to- it doesn't hold us back really. Although I would love to be able to take a break on Christmas Eve and things like that! But we don't and Aidan is doing great.

Megan
 
M

mneville

Guest
Aidan also started nebs at 8 days old prior to any lung issues. We are all about prevention and it is better to start young. He just knows at 2 years old that he does three nebs a day with an hour of the VEST(in two sittings)- no big deal.

He does Xopenex to open the airways with each VEST session and a Pulmozyne at the night VEST session. We actually do more than our CF center recommends- they say one VEST session is fine a day. After seeing Warwick, we choose to do two. We work our schedule out so those VESTs and nebs always fit in. We take it wherever we need to- it doesn't hold us back really. Although I would love to be able to take a break on Christmas Eve and things like that! But we don't and Aidan is doing great.

Megan
 
M

Mommafirst

Guest
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.
 
M

Mommafirst

Guest
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.
 
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