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Pulmozyme

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petnurse

New member
I'm hoping someone can help me here. A friend has started her child on Pulmozyme. This drug has never been mentioned at clinic visits. I looked it up online (Pulmozyme's official website) and it says it is used to increase FEV1 and keep away resp. infections. My son has never really been sick and is too young for any tests besides radiographs. I do like the fact that it says it keeps away resp. infections. My concern is the website also says that they have done very limited studies in children under 5 and it also has not been studied for long term use. How many of you have young children using this? My son is 9 months old. Thanks for your help!
 
P

petnurse

New member
I'm hoping someone can help me here. A friend has started her child on Pulmozyme. This drug has never been mentioned at clinic visits. I looked it up online (Pulmozyme's official website) and it says it is used to increase FEV1 and keep away resp. infections. My son has never really been sick and is too young for any tests besides radiographs. I do like the fact that it says it keeps away resp. infections. My concern is the website also says that they have done very limited studies in children under 5 and it also has not been studied for long term use. How many of you have young children using this? My son is 9 months old. Thanks for your help!
 
P

petnurse

New member
I'm hoping someone can help me here. A friend has started her child on Pulmozyme. This drug has never been mentioned at clinic visits. I looked it up online (Pulmozyme's official website) and it says it is used to increase FEV1 and keep away resp. infections. My son has never really been sick and is too young for any tests besides radiographs. I do like the fact that it says it keeps away resp. infections. My concern is the website also says that they have done very limited studies in children under 5 and it also has not been studied for long term use. How many of you have young children using this? My son is 9 months old. Thanks for your help!
 
P

petnurse

New member
I'm hoping someone can help me here. A friend has started her child on Pulmozyme. This drug has never been mentioned at clinic visits. I looked it up online (Pulmozyme's official website) and it says it is used to increase FEV1 and keep away resp. infections. My son has never really been sick and is too young for any tests besides radiographs. I do like the fact that it says it keeps away resp. infections. My concern is the website also says that they have done very limited studies in children under 5 and it also has not been studied for long term use. How many of you have young children using this? My son is 9 months old. Thanks for your help!
 
P

petnurse

New member
I'm hoping someone can help me here. A friend has started her child on Pulmozyme. This drug has never been mentioned at clinic visits. I looked it up online (Pulmozyme's official website) and it says it is used to increase FEV1 and keep away resp. infections. My son has never really been sick and is too young for any tests besides radiographs. I do like the fact that it says it keeps away resp. infections. My concern is the website also says that they have done very limited studies in children under 5 and it also has not been studied for long term use. How many of you have young children using this? My son is 9 months old. Thanks for your help!
 
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Mommafirst

Guest
Alyssa is on pulmozyme. We waffled a bit in the beginning, actually pulled her off of it after 9 months seeing no difference. Most clinics get them on it by 5 years old, if not sooner.

If you haven't, read the book Power of Two. Its a real story of twins with CF who both eventually got lung transplants a few years ago. One of the things I learned is how their health changed with the introduction of meds like pulmozyme. That book changed the way I think about "the cure" of CF -- we are living it, in some way today....meaning that the meds that are here have offerred a great deal of benefit from what it was like for CFers 30 years ago, but if we don't take advantage of these improvements, we put our kids back to where knowledge was back then.

Don't rush Philip onto it if he has no symptoms, but do plan to try it out in his childhood. Talk to his doctor and ask what the plans are for it. When I asked, our doc gave us the option of starting it sooner. He was happy to go that way.
 
M

Mommafirst

Guest
Alyssa is on pulmozyme. We waffled a bit in the beginning, actually pulled her off of it after 9 months seeing no difference. Most clinics get them on it by 5 years old, if not sooner.

If you haven't, read the book Power of Two. Its a real story of twins with CF who both eventually got lung transplants a few years ago. One of the things I learned is how their health changed with the introduction of meds like pulmozyme. That book changed the way I think about "the cure" of CF -- we are living it, in some way today....meaning that the meds that are here have offerred a great deal of benefit from what it was like for CFers 30 years ago, but if we don't take advantage of these improvements, we put our kids back to where knowledge was back then.

Don't rush Philip onto it if he has no symptoms, but do plan to try it out in his childhood. Talk to his doctor and ask what the plans are for it. When I asked, our doc gave us the option of starting it sooner. He was happy to go that way.
 
M

Mommafirst

Guest
Alyssa is on pulmozyme. We waffled a bit in the beginning, actually pulled her off of it after 9 months seeing no difference. Most clinics get them on it by 5 years old, if not sooner.

If you haven't, read the book Power of Two. Its a real story of twins with CF who both eventually got lung transplants a few years ago. One of the things I learned is how their health changed with the introduction of meds like pulmozyme. That book changed the way I think about "the cure" of CF -- we are living it, in some way today....meaning that the meds that are here have offerred a great deal of benefit from what it was like for CFers 30 years ago, but if we don't take advantage of these improvements, we put our kids back to where knowledge was back then.

Don't rush Philip onto it if he has no symptoms, but do plan to try it out in his childhood. Talk to his doctor and ask what the plans are for it. When I asked, our doc gave us the option of starting it sooner. He was happy to go that way.
 
M

Mommafirst

Guest
Alyssa is on pulmozyme. We waffled a bit in the beginning, actually pulled her off of it after 9 months seeing no difference. Most clinics get them on it by 5 years old, if not sooner.

If you haven't, read the book Power of Two. Its a real story of twins with CF who both eventually got lung transplants a few years ago. One of the things I learned is how their health changed with the introduction of meds like pulmozyme. That book changed the way I think about "the cure" of CF -- we are living it, in some way today....meaning that the meds that are here have offerred a great deal of benefit from what it was like for CFers 30 years ago, but if we don't take advantage of these improvements, we put our kids back to where knowledge was back then.

Don't rush Philip onto it if he has no symptoms, but do plan to try it out in his childhood. Talk to his doctor and ask what the plans are for it. When I asked, our doc gave us the option of starting it sooner. He was happy to go that way.
 
M

Mommafirst

Guest
Alyssa is on pulmozyme. We waffled a bit in the beginning, actually pulled her off of it after 9 months seeing no difference. Most clinics get them on it by 5 years old, if not sooner.
<br />
<br />If you haven't, read the book Power of Two. Its a real story of twins with CF who both eventually got lung transplants a few years ago. One of the things I learned is how their health changed with the introduction of meds like pulmozyme. That book changed the way I think about "the cure" of CF -- we are living it, in some way today....meaning that the meds that are here have offerred a great deal of benefit from what it was like for CFers 30 years ago, but if we don't take advantage of these improvements, we put our kids back to where knowledge was back then.
<br />
<br />Don't rush Philip onto it if he has no symptoms, but do plan to try it out in his childhood. Talk to his doctor and ask what the plans are for it. When I asked, our doc gave us the option of starting it sooner. He was happy to go that way.
 
S

SadiesMom

New member
This is a great question! I'm sort of in the same boat at the moment. At Sadie's next appointment (july) they want to start her on pulmozyme. She'll be 17 months, which seems early to me. I would also be interested to know who has started using it before 5 years and if they've noticed anything. I know CF is all about prevention, but she hasn't had any lung involvement to date. I'm probably just overreacting.
 
S

SadiesMom

New member
This is a great question! I'm sort of in the same boat at the moment. At Sadie's next appointment (july) they want to start her on pulmozyme. She'll be 17 months, which seems early to me. I would also be interested to know who has started using it before 5 years and if they've noticed anything. I know CF is all about prevention, but she hasn't had any lung involvement to date. I'm probably just overreacting.
 
S

SadiesMom

New member
This is a great question! I'm sort of in the same boat at the moment. At Sadie's next appointment (july) they want to start her on pulmozyme. She'll be 17 months, which seems early to me. I would also be interested to know who has started using it before 5 years and if they've noticed anything. I know CF is all about prevention, but she hasn't had any lung involvement to date. I'm probably just overreacting.
 
S

SadiesMom

New member
This is a great question! I'm sort of in the same boat at the moment. At Sadie's next appointment (july) they want to start her on pulmozyme. She'll be 17 months, which seems early to me. I would also be interested to know who has started using it before 5 years and if they've noticed anything. I know CF is all about prevention, but she hasn't had any lung involvement to date. I'm probably just overreacting.
 
S

SadiesMom

New member
This is a great question! I'm sort of in the same boat at the moment. At Sadie's next appointment (july) they want to start her on pulmozyme. She'll be 17 months, which seems early to me. I would also be interested to know who has started using it before 5 years and if they've noticed anything. I know CF is all about prevention, but she hasn't had any lung involvement to date. I'm probably just overreacting.
 
A

ashmomo

New member
Ashlee started it at 2 years...has never affected her and she doesn't get sick very much at all!

Jordin is 11 months old and started Pulmo around 2 mos old if not earlier...She is also on Albuterol/Atrovent Duo-neb, Hyper Saline 3%, and Pulmicort. She has done well with all of them. She has been sick about 10 out of her 11 months of life <img src="i/expressions/face-icon-small-blush.gif" border="0">( Hopefully things look up soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

I know there are many on here who have started on it earlier in life...
 
A

ashmomo

New member
Ashlee started it at 2 years...has never affected her and she doesn't get sick very much at all!

Jordin is 11 months old and started Pulmo around 2 mos old if not earlier...She is also on Albuterol/Atrovent Duo-neb, Hyper Saline 3%, and Pulmicort. She has done well with all of them. She has been sick about 10 out of her 11 months of life <img src="i/expressions/face-icon-small-blush.gif" border="0">( Hopefully things look up soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

I know there are many on here who have started on it earlier in life...
 
A

ashmomo

New member
Ashlee started it at 2 years...has never affected her and she doesn't get sick very much at all!

Jordin is 11 months old and started Pulmo around 2 mos old if not earlier...She is also on Albuterol/Atrovent Duo-neb, Hyper Saline 3%, and Pulmicort. She has done well with all of them. She has been sick about 10 out of her 11 months of life <img src="i/expressions/face-icon-small-blush.gif" border="0">( Hopefully things look up soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

I know there are many on here who have started on it earlier in life...
 
A

ashmomo

New member
Ashlee started it at 2 years...has never affected her and she doesn't get sick very much at all!

Jordin is 11 months old and started Pulmo around 2 mos old if not earlier...She is also on Albuterol/Atrovent Duo-neb, Hyper Saline 3%, and Pulmicort. She has done well with all of them. She has been sick about 10 out of her 11 months of life <img src="i/expressions/face-icon-small-blush.gif" border="0">( Hopefully things look up soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)

I know there are many on here who have started on it earlier in life...
 
A

ashmomo

New member
Ashlee started it at 2 years...has never affected her and she doesn't get sick very much at all!
<br />
<br />Jordin is 11 months old and started Pulmo around 2 mos old if not earlier...She is also on Albuterol/Atrovent Duo-neb, Hyper Saline 3%, and Pulmicort. She has done well with all of them. She has been sick about 10 out of her 11 months of life <img src="i/expressions/face-icon-small-blush.gif" border="0">( Hopefully things look up soon <img src="i/expressions/face-icon-small-blush.gif" border="0">)
<br />
<br />I know there are many on here who have started on it earlier in life...
 
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