Pulmozyme

[Lu]

Hi,
Is anyone using pulmozyme with 2 year old child? My nephew lives in Croatia and his doctor is recommending seeing the baby every 6 months for the culture. He is also not recommending pulmozyme saying that the baby is to young?
From everything I am reading on this site I don't see this baby being taken care of. Any feedback would be appreciated. There is only one specialist in the entire country and the family is considering moving to another country so that they can get the medical attention this baby needs.

Thank you so much!!

 

[Lu]

Hi,
Is anyone using pulmozyme with 2 year old child? My nephew lives in Croatia and his doctor is recommending seeing the baby every 6 months for the culture. He is also not recommending pulmozyme saying that the baby is to young?
From everything I am reading on this site I don't see this baby being taken care of. Any feedback would be appreciated. There is only one specialist in the entire country and the family is considering moving to another country so that they can get the medical attention this baby needs.

Thank you so much!!

 

[Lu]

Hi,
Is anyone using pulmozyme with 2 year old child? My nephew lives in Croatia and his doctor is recommending seeing the baby every 6 months for the culture. He is also not recommending pulmozyme saying that the baby is to young?
From everything I am reading on this site I don't see this baby being taken care of. Any feedback would be appreciated. There is only one specialist in the entire country and the family is considering moving to another country so that they can get the medical attention this baby needs.

Thank you so much!!

 

[tammykrumrey]

Lu,
I understand your concern over your nephew. Sometimes I forget how fortunate my family is to live where we have access to great medical care.
I do know that 15 years ago when my nephew with CF was born, it was common to see his CF doctor only one or two times a year. And when my daughters were diagnosed about 7 years ago, they were seeing their CF doctor every three months, but only doing cultures once a year. Over the past few years they have changed the way things are done and the kids have a culture at every appointment every three months. It does make a huge difference in the health of our little ones (and the big ones too!). Sometimes a lot of damage can be done in a years time. It sounds like Croatia is many years behind how things are done here in the US.
As far as Pulmozyme goes, I have two daughters and as of now, only one is on it. I am not sure that it is necessarily something that they all need to be on unless there is some lung issue that is causing problems. My older daughter has lung issues, but her younger sister still does not, so therefor not on Pulmozyme. I am not sure about others with 2 year olds. Hopefully someone will answer your questions regarding the little ones<img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of Luck!

 

[tammykrumrey]

Lu,
I understand your concern over your nephew. Sometimes I forget how fortunate my family is to live where we have access to great medical care.
I do know that 15 years ago when my nephew with CF was born, it was common to see his CF doctor only one or two times a year. And when my daughters were diagnosed about 7 years ago, they were seeing their CF doctor every three months, but only doing cultures once a year. Over the past few years they have changed the way things are done and the kids have a culture at every appointment every three months. It does make a huge difference in the health of our little ones (and the big ones too!). Sometimes a lot of damage can be done in a years time. It sounds like Croatia is many years behind how things are done here in the US.
As far as Pulmozyme goes, I have two daughters and as of now, only one is on it. I am not sure that it is necessarily something that they all need to be on unless there is some lung issue that is causing problems. My older daughter has lung issues, but her younger sister still does not, so therefor not on Pulmozyme. I am not sure about others with 2 year olds. Hopefully someone will answer your questions regarding the little ones<img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of Luck!

 

[tammykrumrey]

Lu,
I understand your concern over your nephew. Sometimes I forget how fortunate my family is to live where we have access to great medical care.
I do know that 15 years ago when my nephew with CF was born, it was common to see his CF doctor only one or two times a year. And when my daughters were diagnosed about 7 years ago, they were seeing their CF doctor every three months, but only doing cultures once a year. Over the past few years they have changed the way things are done and the kids have a culture at every appointment every three months. It does make a huge difference in the health of our little ones (and the big ones too!). Sometimes a lot of damage can be done in a years time. It sounds like Croatia is many years behind how things are done here in the US.
As far as Pulmozyme goes, I have two daughters and as of now, only one is on it. I am not sure that it is necessarily something that they all need to be on unless there is some lung issue that is causing problems. My older daughter has lung issues, but her younger sister still does not, so therefor not on Pulmozyme. I am not sure about others with 2 year olds. Hopefully someone will answer your questions regarding the little ones<img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of Luck!

 

[Keirasmom]

Hi..
I think it depends on the child. We just started our 5 month old on Pulmozyme while she has a cold and is getting cultured once a month right now. I would push to get some better answers.

 

[Keirasmom]

Hi..
I think it depends on the child. We just started our 5 month old on Pulmozyme while she has a cold and is getting cultured once a month right now. I would push to get some better answers.

 

[Keirasmom]

Hi..
I think it depends on the child. We just started our 5 month old on Pulmozyme while she has a cold and is getting cultured once a month right now. I would push to get some better answers.

 

[Lu]

Thank you so much for sharing. I will relate the information to baby's parents. They have no other ways of learning. I was looking for some literature on the CF in Croatian and they have nothing past the basic information provided by the World Health Org.

 

[Lu]

Thank you so much for sharing. I will relate the information to baby's parents. They have no other ways of learning. I was looking for some literature on the CF in Croatian and they have nothing past the basic information provided by the World Health Org.

 

[Lu]

Thank you so much for sharing. I will relate the information to baby's parents. They have no other ways of learning. I was looking for some literature on the CF in Croatian and they have nothing past the basic information provided by the World Health Org.

 

[Ratatosk]

DS was put on pulmozyme about a year ago -- he was 2 1/2 at the time. Don't know if it makes a difference or not. It is VERY expensive. Might be other alternatives -- mucomyst?

I think the most important thing in terms of caring for a young CFer is proper lung care. Keeping the lungs healthy -- preventative. Chest Physiotherapy 2-4 times a day. We do it 3 times a day with bronchiodialators (atrovent & albuterol).

Enzymes if needed to ensure proper nutrition and growth. Vitamins -- ADEK, especially since CFers tend to malabsorb.

 

[Ratatosk]

DS was put on pulmozyme about a year ago -- he was 2 1/2 at the time. Don't know if it makes a difference or not. It is VERY expensive. Might be other alternatives -- mucomyst?

I think the most important thing in terms of caring for a young CFer is proper lung care. Keeping the lungs healthy -- preventative. Chest Physiotherapy 2-4 times a day. We do it 3 times a day with bronchiodialators (atrovent & albuterol).

Enzymes if needed to ensure proper nutrition and growth. Vitamins -- ADEK, especially since CFers tend to malabsorb.

 

[Ratatosk]

DS was put on pulmozyme about a year ago -- he was 2 1/2 at the time. Don't know if it makes a difference or not. It is VERY expensive. Might be other alternatives -- mucomyst?

I think the most important thing in terms of caring for a young CFer is proper lung care. Keeping the lungs healthy -- preventative. Chest Physiotherapy 2-4 times a day. We do it 3 times a day with bronchiodialators (atrovent & albuterol).

Enzymes if needed to ensure proper nutrition and growth. Vitamins -- ADEK, especially since CFers tend to malabsorb.

 

[Lu]

I just called my brother in Croatia and read him your messages. He is thrilled that he can hear from other parents who have children with CF. He has another question: His son who is 2 years old is on Garamycin (anti biotic) inhalation every other day to stop Pseudomonas from growing. From what I read in US most patients use Tobi inhalation. Unfortunately Tobi is not available in Europe. I like to be able to help my nephew by purchasing Tobi here, but when I heard the price of $100. per ampoule I could not believe how costly it is. Is there a company out there that makes les expensive comparable inhalation antibiotic?
Thanks a million!!

 

[Lu]

I just called my brother in Croatia and read him your messages. He is thrilled that he can hear from other parents who have children with CF. He has another question: His son who is 2 years old is on Garamycin (anti biotic) inhalation every other day to stop Pseudomonas from growing. From what I read in US most patients use Tobi inhalation. Unfortunately Tobi is not available in Europe. I like to be able to help my nephew by purchasing Tobi here, but when I heard the price of $100. per ampoule I could not believe how costly it is. Is there a company out there that makes les expensive comparable inhalation antibiotic?
Thanks a million!!

 

[Lu]

I just called my brother in Croatia and read him your messages. He is thrilled that he can hear from other parents who have children with CF. He has another question: His son who is 2 years old is on Garamycin (anti biotic) inhalation every other day to stop Pseudomonas from growing. From what I read in US most patients use Tobi inhalation. Unfortunately Tobi is not available in Europe. I like to be able to help my nephew by purchasing Tobi here, but when I heard the price of $100. per ampoule I could not believe how costly it is. Is there a company out there that makes les expensive comparable inhalation antibiotic?
Thanks a million!!

 

[Marjolein]

Hi Lu,
i can't really help you.. But i'd want to say that Tobi is available in Europe. I know many people over here who use it. I myself have never been on it but i had Colomycin nebulizers to treat my Pseudomonas.
I have heard people who inhale/have inhaled the IV type Tobramycin too. Don't know if that would be less expensive and maybe available in Croatia.
Good luck!

 

[Marjolein]

Hi Lu,
i can't really help you.. But i'd want to say that Tobi is available in Europe. I know many people over here who use it. I myself have never been on it but i had Colomycin nebulizers to treat my Pseudomonas.
I have heard people who inhale/have inhaled the IV type Tobramycin too. Don't know if that would be less expensive and maybe available in Croatia.
Good luck!