Pulmozyme

[hmw]

At our clinic they put kids on it at the first sign of pulmonary involvement, or by age 6, whichever comes first.

Emily was late to dx (7.5) and was gradually changing other stuff so didn't start it until 6mo ago (I didn't want to change more than one therapy at a time so this came later.) We saw a BIG difference when she did. Her pft's went up by more than 10% and for the first time in many years, she's had colds that DIDN'T progress to needing antibiotics. That alone to me is nothing short of amazing, and would make it worth being on, even if her pft's didn't go up!

I know you want experiences of those with babies/very young children, but I only wanted to add our experience because I think the role this med can play in being able to make mucus easier to clear can help reduce infection (and therefore also the need for abx) ...and that can really be of benefit to the little ones. And stopping the damage infection causes right from the start is also crucial.

 

[hmw]

At our clinic they put kids on it at the first sign of pulmonary involvement, or by age 6, whichever comes first.

Emily was late to dx (7.5) and was gradually changing other stuff so didn't start it until 6mo ago (I didn't want to change more than one therapy at a time so this came later.) We saw a BIG difference when she did. Her pft's went up by more than 10% and for the first time in many years, she's had colds that DIDN'T progress to needing antibiotics. That alone to me is nothing short of amazing, and would make it worth being on, even if her pft's didn't go up!

I know you want experiences of those with babies/very young children, but I only wanted to add our experience because I think the role this med can play in being able to make mucus easier to clear can help reduce infection (and therefore also the need for abx) ...and that can really be of benefit to the little ones. And stopping the damage infection causes right from the start is also crucial.

 

[hmw]

At our clinic they put kids on it at the first sign of pulmonary involvement, or by age 6, whichever comes first.

Emily was late to dx (7.5) and was gradually changing other stuff so didn't start it until 6mo ago (I didn't want to change more than one therapy at a time so this came later.) We saw a BIG difference when she did. Her pft's went up by more than 10% and for the first time in many years, she's had colds that DIDN'T progress to needing antibiotics. That alone to me is nothing short of amazing, and would make it worth being on, even if her pft's didn't go up!

I know you want experiences of those with babies/very young children, but I only wanted to add our experience because I think the role this med can play in being able to make mucus easier to clear can help reduce infection (and therefore also the need for abx) ...and that can really be of benefit to the little ones. And stopping the damage infection causes right from the start is also crucial.

 

[hmw]

At our clinic they put kids on it at the first sign of pulmonary involvement, or by age 6, whichever comes first.

Emily was late to dx (7.5) and was gradually changing other stuff so didn't start it until 6mo ago (I didn't want to change more than one therapy at a time so this came later.) We saw a BIG difference when she did. Her pft's went up by more than 10% and for the first time in many years, she's had colds that DIDN'T progress to needing antibiotics. That alone to me is nothing short of amazing, and would make it worth being on, even if her pft's didn't go up!

I know you want experiences of those with babies/very young children, but I only wanted to add our experience because I think the role this med can play in being able to make mucus easier to clear can help reduce infection (and therefore also the need for abx) ...and that can really be of benefit to the little ones. And stopping the damage infection causes right from the start is also crucial.

 

[hmw]

At our clinic they put kids on it at the first sign of pulmonary involvement, or by age 6, whichever comes first.
<br />
<br />Emily was late to dx (7.5) and was gradually changing other stuff so didn't start it until 6mo ago (I didn't want to change more than one therapy at a time so this came later.) We saw a BIG difference when she did. Her pft's went up by more than 10% and for the first time in many years, she's had colds that DIDN'T progress to needing antibiotics. That alone to me is nothing short of amazing, and would make it worth being on, even if her pft's didn't go up!
<br />
<br />I know you want experiences of those with babies/very young children, but I only wanted to add our experience because I think the role this med can play in being able to make mucus easier to clear can help reduce infection (and therefore also the need for abx) ...and that can really be of benefit to the little ones. And stopping the damage infection causes right from the start is also crucial.

 

[lilismom]

Lili started on pulmozyme when she was dx'd at 3. At the time she was pretty sick. We've done it everyday now for 4 years.

 

[lilismom]

Lili started on pulmozyme when she was dx'd at 3. At the time she was pretty sick. We've done it everyday now for 4 years.

 

[lilismom]

Lili started on pulmozyme when she was dx'd at 3. At the time she was pretty sick. We've done it everyday now for 4 years.

 

[lilismom]

Lili started on pulmozyme when she was dx'd at 3. At the time she was pretty sick. We've done it everyday now for 4 years.

 

[lilismom]

Lili started on pulmozyme when she was dx'd at 3. At the time she was pretty sick. We've done it everyday now for 4 years.

 

[NYCLawGirl]

I was actually on the Pulmozyme (aka DNase) study back when it was first introduced. I forget when that was, but it was sometime in my middle schoolish years, and I'm now 28. I've been on it non-stop ever since.

This was, I believe, the second drug EVER to be developed specifically for the treatment of CF. TOBI was first, and DNase was right on its heels. Those two drugs were credited with quite a bit of the life expectancy jump in the mid 90s.

Almost every single CFer will be on this drug by the time they hit mid-childhood. It's the standard of care for CF, and really the only people I know who aren't on it regularly are people with sever bleeding issues, b/c the drug can sometimes exacerbate those. I have heard of certain clinics that seem to prefer Mucomyst (a very old school mucolytic, and what many of us were on prior to the development of pulmozyme), but it's very rare. And I've heard of kids starting it extremely young, but it seems like the average is between 3-6 years old to start.

Pulmo doesn't work to combat respiratory infections, per se -- what it does is thin the mucus in the lungs and make it more watery so that it can be coughed out. This, in turn, makes infections less frequent and gives the bacteria fewer places to hide and thrive. It increases FEV1 in the same way. Most of the time kids go on it early now, though, so it's more preventative than it is used to give a sudden boost. My FEV1 shot back up to over 100% when I first started the drug, but mostly it's more of a controller medication.

 

[NYCLawGirl]

I was actually on the Pulmozyme (aka DNase) study back when it was first introduced. I forget when that was, but it was sometime in my middle schoolish years, and I'm now 28. I've been on it non-stop ever since.

This was, I believe, the second drug EVER to be developed specifically for the treatment of CF. TOBI was first, and DNase was right on its heels. Those two drugs were credited with quite a bit of the life expectancy jump in the mid 90s.

Almost every single CFer will be on this drug by the time they hit mid-childhood. It's the standard of care for CF, and really the only people I know who aren't on it regularly are people with sever bleeding issues, b/c the drug can sometimes exacerbate those. I have heard of certain clinics that seem to prefer Mucomyst (a very old school mucolytic, and what many of us were on prior to the development of pulmozyme), but it's very rare. And I've heard of kids starting it extremely young, but it seems like the average is between 3-6 years old to start.

Pulmo doesn't work to combat respiratory infections, per se -- what it does is thin the mucus in the lungs and make it more watery so that it can be coughed out. This, in turn, makes infections less frequent and gives the bacteria fewer places to hide and thrive. It increases FEV1 in the same way. Most of the time kids go on it early now, though, so it's more preventative than it is used to give a sudden boost. My FEV1 shot back up to over 100% when I first started the drug, but mostly it's more of a controller medication.

 

[NYCLawGirl]

I was actually on the Pulmozyme (aka DNase) study back when it was first introduced. I forget when that was, but it was sometime in my middle schoolish years, and I'm now 28. I've been on it non-stop ever since.

This was, I believe, the second drug EVER to be developed specifically for the treatment of CF. TOBI was first, and DNase was right on its heels. Those two drugs were credited with quite a bit of the life expectancy jump in the mid 90s.

Almost every single CFer will be on this drug by the time they hit mid-childhood. It's the standard of care for CF, and really the only people I know who aren't on it regularly are people with sever bleeding issues, b/c the drug can sometimes exacerbate those. I have heard of certain clinics that seem to prefer Mucomyst (a very old school mucolytic, and what many of us were on prior to the development of pulmozyme), but it's very rare. And I've heard of kids starting it extremely young, but it seems like the average is between 3-6 years old to start.

Pulmo doesn't work to combat respiratory infections, per se -- what it does is thin the mucus in the lungs and make it more watery so that it can be coughed out. This, in turn, makes infections less frequent and gives the bacteria fewer places to hide and thrive. It increases FEV1 in the same way. Most of the time kids go on it early now, though, so it's more preventative than it is used to give a sudden boost. My FEV1 shot back up to over 100% when I first started the drug, but mostly it's more of a controller medication.

 

[NYCLawGirl]

I was actually on the Pulmozyme (aka DNase) study back when it was first introduced. I forget when that was, but it was sometime in my middle schoolish years, and I'm now 28. I've been on it non-stop ever since.

This was, I believe, the second drug EVER to be developed specifically for the treatment of CF. TOBI was first, and DNase was right on its heels. Those two drugs were credited with quite a bit of the life expectancy jump in the mid 90s.

Almost every single CFer will be on this drug by the time they hit mid-childhood. It's the standard of care for CF, and really the only people I know who aren't on it regularly are people with sever bleeding issues, b/c the drug can sometimes exacerbate those. I have heard of certain clinics that seem to prefer Mucomyst (a very old school mucolytic, and what many of us were on prior to the development of pulmozyme), but it's very rare. And I've heard of kids starting it extremely young, but it seems like the average is between 3-6 years old to start.

Pulmo doesn't work to combat respiratory infections, per se -- what it does is thin the mucus in the lungs and make it more watery so that it can be coughed out. This, in turn, makes infections less frequent and gives the bacteria fewer places to hide and thrive. It increases FEV1 in the same way. Most of the time kids go on it early now, though, so it's more preventative than it is used to give a sudden boost. My FEV1 shot back up to over 100% when I first started the drug, but mostly it's more of a controller medication.

 

[NYCLawGirl]

I was actually on the Pulmozyme (aka DNase) study back when it was first introduced. I forget when that was, but it was sometime in my middle schoolish years, and I'm now 28. I've been on it non-stop ever since.
<br />
<br />This was, I believe, the second drug EVER to be developed specifically for the treatment of CF. TOBI was first, and DNase was right on its heels. Those two drugs were credited with quite a bit of the life expectancy jump in the mid 90s.
<br />
<br />Almost every single CFer will be on this drug by the time they hit mid-childhood. It's the standard of care for CF, and really the only people I know who aren't on it regularly are people with sever bleeding issues, b/c the drug can sometimes exacerbate those. I have heard of certain clinics that seem to prefer Mucomyst (a very old school mucolytic, and what many of us were on prior to the development of pulmozyme), but it's very rare. And I've heard of kids starting it extremely young, but it seems like the average is between 3-6 years old to start.
<br />
<br />Pulmo doesn't work to combat respiratory infections, per se -- what it does is thin the mucus in the lungs and make it more watery so that it can be coughed out. This, in turn, makes infections less frequent and gives the bacteria fewer places to hide and thrive. It increases FEV1 in the same way. Most of the time kids go on it early now, though, so it's more preventative than it is used to give a sudden boost. My FEV1 shot back up to over 100% when I first started the drug, but mostly it's more of a controller medication.

 

[sdelorenzo]

My daughter started on it at her first birthday. I could tell a difference. She just stayed healthier (her colds went away easier). My son started on it at one month of age. Both were preventative (my kids were doing great) and my suggestion.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 no cf

 

[sdelorenzo]

My daughter started on it at her first birthday. I could tell a difference. She just stayed healthier (her colds went away easier). My son started on it at one month of age. Both were preventative (my kids were doing great) and my suggestion.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 no cf

 

[sdelorenzo]

My daughter started on it at her first birthday. I could tell a difference. She just stayed healthier (her colds went away easier). My son started on it at one month of age. Both were preventative (my kids were doing great) and my suggestion.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 no cf

 

[sdelorenzo]

My daughter started on it at her first birthday. I could tell a difference. She just stayed healthier (her colds went away easier). My son started on it at one month of age. Both were preventative (my kids were doing great) and my suggestion.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 no cf

 

[sdelorenzo]

My daughter started on it at her first birthday. I could tell a difference. She just stayed healthier (her colds went away easier). My son started on it at one month of age. Both were preventative (my kids were doing great) and my suggestion.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 14 no cf