Changing our order of medications

R

Rebjane

Super Moderator
My daughter has had a tough winter respiratory wise this year. She seems to be almost back to baseline(knock wood), pending any cold she may pick up at school.

A couple things I have done; which I think have made a difference(besides being on antibiotics constantly this winter): I pause her VEST every 5 minutes or so and make her take deep breathes and cough, sometimes there is stuff there; have yet been able to get her to cough it into a tissue; but it's a start.

Also, I moved her pulmozyme away from her HTS neb. I used to do her pulmozyme after her HTS and before her VEST. Now I do albuterol then pulmozyme then VEST after school. I guess there is some theory that the High salt concentration in the lungs can inactivate the pulmozyme?

Finally, I moved her pulmicort neb to after her VEST. This is when it is supposed to be done but I had used to mix it with her albuterol to save time.

Anyway, next time I see her pulmo I'll fill him in on the changes I've done. It could be a coincidence that 2 days after I made all the changes her breathing seemed inproved or it could be the antibiotics finally kicked in but I thought i would post this in case it could help someone else.

I really thought long and hard about all of this before implementing these changes. It is important for us to take the time to really think about our kids health regimes and think about what works and what doesn't periodically.
 
R

Rebjane

Super Moderator
My daughter has had a tough winter respiratory wise this year. She seems to be almost back to baseline(knock wood), pending any cold she may pick up at school.

A couple things I have done; which I think have made a difference(besides being on antibiotics constantly this winter): I pause her VEST every 5 minutes or so and make her take deep breathes and cough, sometimes there is stuff there; have yet been able to get her to cough it into a tissue; but it's a start.

Also, I moved her pulmozyme away from her HTS neb. I used to do her pulmozyme after her HTS and before her VEST. Now I do albuterol then pulmozyme then VEST after school. I guess there is some theory that the High salt concentration in the lungs can inactivate the pulmozyme?

Finally, I moved her pulmicort neb to after her VEST. This is when it is supposed to be done but I had used to mix it with her albuterol to save time.

Anyway, next time I see her pulmo I'll fill him in on the changes I've done. It could be a coincidence that 2 days after I made all the changes her breathing seemed inproved or it could be the antibiotics finally kicked in but I thought i would post this in case it could help someone else.

I really thought long and hard about all of this before implementing these changes. It is important for us to take the time to really think about our kids health regimes and think about what works and what doesn't periodically.
 
R

Rebjane

Super Moderator
My daughter has had a tough winter respiratory wise this year. She seems to be almost back to baseline(knock wood), pending any cold she may pick up at school.
<br />
<br />A couple things I have done; which I think have made a difference(besides being on antibiotics constantly this winter): I pause her VEST every 5 minutes or so and make her take deep breathes and cough, sometimes there is stuff there; have yet been able to get her to cough it into a tissue; but it's a start.
<br />
<br />Also, I moved her pulmozyme away from her HTS neb. I used to do her pulmozyme after her HTS and before her VEST. Now I do albuterol then pulmozyme then VEST after school. I guess there is some theory that the High salt concentration in the lungs can inactivate the pulmozyme?
<br />
<br />Finally, I moved her pulmicort neb to after her VEST. This is when it is supposed to be done but I had used to mix it with her albuterol to save time.
<br />
<br />Anyway, next time I see her pulmo I'll fill him in on the changes I've done. It could be a coincidence that 2 days after I made all the changes her breathing seemed inproved or it could be the antibiotics finally kicked in but I thought i would post this in case it could help someone else.
<br />
<br />I really thought long and hard about all of this before implementing these changes. It is important for us to take the time to really think about our kids health regimes and think about what works and what doesn't periodically.
 
C

Cherylwithone

Guest
My daughters CF clini has them do it
*albuterol/Xopenex
*hypertonic saline
*pulmozyme
*airway clearance
*inhaled antibiotic
*inhaled steroids

I guess what ever works and has her feeling better. I hope it stays working for her after she stops the antibiotics.
 
C

Cherylwithone

Guest
My daughters CF clini has them do it
*albuterol/Xopenex
*hypertonic saline
*pulmozyme
*airway clearance
*inhaled antibiotic
*inhaled steroids

I guess what ever works and has her feeling better. I hope it stays working for her after she stops the antibiotics.
 
C

Cherylwithone

Guest
My daughters CF clini has them do it
<br />*albuterol/Xopenex
<br />*hypertonic saline
<br />*pulmozyme
<br />*airway clearance
<br />*inhaled antibiotic
<br />*inhaled steroids
<br />
<br />I guess what ever works and has her feeling better. I hope it stays working for her after she stops the antibiotics.
 
I

izemmom

New member
Interesting. I made a note to ask our CF team about the salt concentration making pulmozyme inactive theory. We do HTS the pulmozyme immediately after in the morning. It's working for us currently, but it's a good thing to research. I have found that when I bring stuff up like this the docs really do look into it. Thanks for the discussion!!!
 
I

izemmom

New member
Interesting. I made a note to ask our CF team about the salt concentration making pulmozyme inactive theory. We do HTS the pulmozyme immediately after in the morning. It's working for us currently, but it's a good thing to research. I have found that when I bring stuff up like this the docs really do look into it. Thanks for the discussion!!!
 
I

izemmom

New member
Interesting. I made a note to ask our CF team about the salt concentration making pulmozyme inactive theory. We do HTS the pulmozyme immediately after in the morning. It's working for us currently, but it's a good thing to research. I have found that when I bring stuff up like this the docs really do look into it. Thanks for the discussion!!!
 
A

AnD

New member
When I first started HS, my doctor had a concern about HS inactivating the Pulmozyme, so I've never done one right after the other, and have always done Pulmozyme after HS. I've also been told to stop and cough between vest settings (mine are usually 5-7 minutes long), though I forget to a lot <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

If you're interested, my med order is: Xopenex, HS, vest, Pulmozyme, Advair (then antibiotic if I'm on one). Most people do the antibiotic and then the steriod, but I need the steriod before I do my antibiotic so I don't get sob (short of breath <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) and to keep the inflamation down, otherwise I don't tolerate it well and have to stop early.

I hope this new med order keeps working for y'all!
 
A

AnD

New member
When I first started HS, my doctor had a concern about HS inactivating the Pulmozyme, so I've never done one right after the other, and have always done Pulmozyme after HS. I've also been told to stop and cough between vest settings (mine are usually 5-7 minutes long), though I forget to a lot <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

If you're interested, my med order is: Xopenex, HS, vest, Pulmozyme, Advair (then antibiotic if I'm on one). Most people do the antibiotic and then the steriod, but I need the steriod before I do my antibiotic so I don't get sob (short of breath <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) and to keep the inflamation down, otherwise I don't tolerate it well and have to stop early.

I hope this new med order keeps working for y'all!
 
A

AnD

New member
When I first started HS, my doctor had a concern about HS inactivating the Pulmozyme, so I've never done one right after the other, and have always done Pulmozyme after HS. I've also been told to stop and cough between vest settings (mine are usually 5-7 minutes long), though I forget to a lot <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
<br />
<br />If you're interested, my med order is: Xopenex, HS, vest, Pulmozyme, Advair (then antibiotic if I'm on one). Most people do the antibiotic and then the steriod, but I need the steriod before I do my antibiotic so I don't get sob (short of breath <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) and to keep the inflamation down, otherwise I don't tolerate it well and have to stop early.
<br />
<br /> I hope this new med order keeps working for y'all!
 
D

dragonlady

New member
This sounds a lot like what they told my daughter and I at Johns Hopkins.

First is Albuterol.
Start neb with Pulmozyme(morning)Hypertonic(evening)
Vest 5 minutes at setting 10
Huff 2-6 times
Vest 5 minutes at setting 10
Huff 2-6 times
Vest 5 minutes at setting 11
Huff 2-6 times
Vest 5 minutes at setting 11
Huff 2-6 times
Vest 5 minutes at setting 12
Huff 2-6 times
Vest 5 minutes at setting 12
Huff 2-6 times
Then Tobramycin

*huffing is forcing air out of your lungs through the mouth only, by using deep breaths. A good way to get it is by using a unfolded tissue about 2-3 inches from the mouth. Try and force the tissue to move by breathing out of your mouth. Much like PFT's.

Total vest time 30 minutes, total time with huffing 45-60 minutes.

The number's that we use were determined by the highest setting my daughter could tolerate comforably and going 2 down from there to start. With her being a pre-teen, she is getting uncomfortable around her chest when doing the vest so it's not that high.

It takes awhile but, I have seen improvements in her PFT numbers since we started a year ago.
 
D

dragonlady

New member
This sounds a lot like what they told my daughter and I at Johns Hopkins.

First is Albuterol.
Start neb with Pulmozyme(morning)Hypertonic(evening)
Vest 5 minutes at setting 10
Huff 2-6 times
Vest 5 minutes at setting 10
Huff 2-6 times
Vest 5 minutes at setting 11
Huff 2-6 times
Vest 5 minutes at setting 11
Huff 2-6 times
Vest 5 minutes at setting 12
Huff 2-6 times
Vest 5 minutes at setting 12
Huff 2-6 times
Then Tobramycin

*huffing is forcing air out of your lungs through the mouth only, by using deep breaths. A good way to get it is by using a unfolded tissue about 2-3 inches from the mouth. Try and force the tissue to move by breathing out of your mouth. Much like PFT's.

Total vest time 30 minutes, total time with huffing 45-60 minutes.

The number's that we use were determined by the highest setting my daughter could tolerate comforably and going 2 down from there to start. With her being a pre-teen, she is getting uncomfortable around her chest when doing the vest so it's not that high.

It takes awhile but, I have seen improvements in her PFT numbers since we started a year ago.
 
D

dragonlady

New member
This sounds a lot like what they told my daughter and I at Johns Hopkins.
<br />
<br />First is Albuterol.
<br />Start neb with Pulmozyme(morning)Hypertonic(evening)
<br />Vest 5 minutes at setting 10
<br />Huff 2-6 times
<br />Vest 5 minutes at setting 10
<br />Huff 2-6 times
<br />Vest 5 minutes at setting 11
<br />Huff 2-6 times
<br />Vest 5 minutes at setting 11
<br />Huff 2-6 times
<br />Vest 5 minutes at setting 12
<br />Huff 2-6 times
<br />Vest 5 minutes at setting 12
<br />Huff 2-6 times
<br />Then Tobramycin
<br />
<br />*huffing is forcing air out of your lungs through the mouth only, by using deep breaths. A good way to get it is by using a unfolded tissue about 2-3 inches from the mouth. Try and force the tissue to move by breathing out of your mouth. Much like PFT's.
<br />
<br />Total vest time 30 minutes, total time with huffing 45-60 minutes.
<br />
<br />The number's that we use were determined by the highest setting my daughter could tolerate comforably and going 2 down from there to start. With her being a pre-teen, she is getting uncomfortable around her chest when doing the vest so it's not that high.
<br />
<br />It takes awhile but, I have seen improvements in her PFT numbers since we started a year ago.
 
2

2girls

New member
I read your posts and since we started vest and nebulizer treatments last year, we have always done albuterol and then pulmozyme while we are doing vest. Is that not the right thing to do? He is too young to stop and cough or huff and we do not do HS. This is how our respiratory therapist started us. When healthy, we do vest and neb 2x a day for 30 min. Babysitter does additional 1-2 albuterol inhaler and manual CPT when he needs it. Thanks
 
2

2girls

New member
I read your posts and since we started vest and nebulizer treatments last year, we have always done albuterol and then pulmozyme while we are doing vest. Is that not the right thing to do? He is too young to stop and cough or huff and we do not do HS. This is how our respiratory therapist started us. When healthy, we do vest and neb 2x a day for 30 min. Babysitter does additional 1-2 albuterol inhaler and manual CPT when he needs it. Thanks
 
2

2girls

New member
I read your posts and since we started vest and nebulizer treatments last year, we have always done albuterol and then pulmozyme while we are doing vest. Is that not the right thing to do? He is too young to stop and cough or huff and we do not do HS. This is how our respiratory therapist started us. When healthy, we do vest and neb 2x a day for 30 min. Babysitter does additional 1-2 albuterol inhaler and manual CPT when he needs it. Thanks
 
D

dragonlady

New member
I would do what your respiratory therapist recommends for his age group. My daughter is almost 13 years old, and also uses the inhaler form of albuterol not the nebulized solution. She must use that before she starts the vest, because she inhales and holds it for as long as possible. If she used it with the vest it would push the albuterol right out.
 
D

dragonlady

New member
I would do what your respiratory therapist recommends for his age group. My daughter is almost 13 years old, and also uses the inhaler form of albuterol not the nebulized solution. She must use that before she starts the vest, because she inhales and holds it for as long as possible. If she used it with the vest it would push the albuterol right out.
 
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