Dumb ???

[chattyfamily]

Can anyone tell me about some of these medications that everyone is discussing? TOBI and Pulmozyme? Is this what I can expect my son to eventually be on? What are they for? He is recently diagnosed one year old. no lung problems, positive for staph, enzymes, albuterol and CPT twice a day. Thanks, I know this is a general ?? but I have a lot of ??'s! This is very new.

 

[chattyfamily]

Can anyone tell me about some of these medications that everyone is discussing? TOBI and Pulmozyme? Is this what I can expect my son to eventually be on? What are they for? He is recently diagnosed one year old. no lung problems, positive for staph, enzymes, albuterol and CPT twice a day. Thanks, I know this is a general ?? but I have a lot of ??'s! This is very new.

 

[chattyfamily]

Can anyone tell me about some of these medications that everyone is discussing? TOBI and Pulmozyme? Is this what I can expect my son to eventually be on? What are they for? He is recently diagnosed one year old. no lung problems, positive for staph, enzymes, albuterol and CPT twice a day. Thanks, I know this is a general ?? but I have a lot of ??'s! This is very new.

 

[JazzysMom]

TOBI & Colistin are an inhaled antibiotics usually used to fight pseudomonas and often is used as a maintenance drug rather then when there is a flare up. If he doesnt culture pseudomonas (PA) chance are he wont use it yet. Pulmozyme thins the mucuous out. Some people dont use this and use another med called Mucomyst. There is also Hyertonic Saline which is suppose to moisten the mucuous up which helps it come up. Some doctors have their patients use pulmozyme/mucomyst OR hypertonic saline and others have them use BOTH. IN addition to albeuterol often advair &/or pulmicort is added if the airways are restricted. Sometimes its from asthma or allergies. These are all inhaled into the lungs. In addition there are oral meds that are often part of a regular CF routine like ADEK vitamin, Acid Reducers etc. There is a lot that is eventually incorperated into a CFers routine especially as they get older &/or different issues arise. I hope I covered SOME answers!

 

[JazzysMom]

TOBI & Colistin are an inhaled antibiotics usually used to fight pseudomonas and often is used as a maintenance drug rather then when there is a flare up. If he doesnt culture pseudomonas (PA) chance are he wont use it yet. Pulmozyme thins the mucuous out. Some people dont use this and use another med called Mucomyst. There is also Hyertonic Saline which is suppose to moisten the mucuous up which helps it come up. Some doctors have their patients use pulmozyme/mucomyst OR hypertonic saline and others have them use BOTH. IN addition to albeuterol often advair &/or pulmicort is added if the airways are restricted. Sometimes its from asthma or allergies. These are all inhaled into the lungs. In addition there are oral meds that are often part of a regular CF routine like ADEK vitamin, Acid Reducers etc. There is a lot that is eventually incorperated into a CFers routine especially as they get older &/or different issues arise. I hope I covered SOME answers!

 

[JazzysMom]

TOBI & Colistin are an inhaled antibiotics usually used to fight pseudomonas and often is used as a maintenance drug rather then when there is a flare up. If he doesnt culture pseudomonas (PA) chance are he wont use it yet. Pulmozyme thins the mucuous out. Some people dont use this and use another med called Mucomyst. There is also Hyertonic Saline which is suppose to moisten the mucuous up which helps it come up. Some doctors have their patients use pulmozyme/mucomyst OR hypertonic saline and others have them use BOTH. IN addition to albeuterol often advair &/or pulmicort is added if the airways are restricted. Sometimes its from asthma or allergies. These are all inhaled into the lungs. In addition there are oral meds that are often part of a regular CF routine like ADEK vitamin, Acid Reducers etc. There is a lot that is eventually incorperated into a CFers routine especially as they get older &/or different issues arise. I hope I covered SOME answers!

 

[Alyssa]

Melissa -- it's not a stupid question ! Ask away !!! It's what we are all here for.

Not much I could add to Melissa's answers, except to say yes, Pulmozyme is pretty commonly prescribed and at some point I'm sure they will want your son to start it. It is very good stuff, very few side effects (I've never heard anyone complain about it at all) but it is expensive ($1700 per month) and needs to be refrigerated. But I have to say.... when the time comes it's something you want to welcome, because I can say without a doubt my daughter has gotten far fewer lung infections since starting the Pulmozyme & Hyptertonic Saline.

Hopefully you will not need the inhaled antibiotics for a long time. The staph can be treated with just oral antibiotics.

 

[Alyssa]

Melissa -- it's not a stupid question ! Ask away !!! It's what we are all here for.

Not much I could add to Melissa's answers, except to say yes, Pulmozyme is pretty commonly prescribed and at some point I'm sure they will want your son to start it. It is very good stuff, very few side effects (I've never heard anyone complain about it at all) but it is expensive ($1700 per month) and needs to be refrigerated. But I have to say.... when the time comes it's something you want to welcome, because I can say without a doubt my daughter has gotten far fewer lung infections since starting the Pulmozyme & Hyptertonic Saline.

Hopefully you will not need the inhaled antibiotics for a long time. The staph can be treated with just oral antibiotics.

 

[Alyssa]

Melissa -- it's not a stupid question ! Ask away !!! It's what we are all here for.

Not much I could add to Melissa's answers, except to say yes, Pulmozyme is pretty commonly prescribed and at some point I'm sure they will want your son to start it. It is very good stuff, very few side effects (I've never heard anyone complain about it at all) but it is expensive ($1700 per month) and needs to be refrigerated. But I have to say.... when the time comes it's something you want to welcome, because I can say without a doubt my daughter has gotten far fewer lung infections since starting the Pulmozyme & Hyptertonic Saline.

Hopefully you will not need the inhaled antibiotics for a long time. The staph can be treated with just oral antibiotics.

 

[Samsmom]

My daughter was dx last year at age 12 and the only inhailed med we use is plain old albuterol in a nebulizer. This is a great post because I did not know exactly what all those med were for either. We deal with more digestive issues than lung issues and she takes lots of pills, but she only cultured strep. so there is no need for all the other inhailed meds. right now. Hopefully that is all a long way off for her. Great question!!!

 

[Samsmom]

My daughter was dx last year at age 12 and the only inhailed med we use is plain old albuterol in a nebulizer. This is a great post because I did not know exactly what all those med were for either. We deal with more digestive issues than lung issues and she takes lots of pills, but she only cultured strep. so there is no need for all the other inhailed meds. right now. Hopefully that is all a long way off for her. Great question!!!

 

[Samsmom]

My daughter was dx last year at age 12 and the only inhailed med we use is plain old albuterol in a nebulizer. This is a great post because I did not know exactly what all those med were for either. We deal with more digestive issues than lung issues and she takes lots of pills, but she only cultured strep. so there is no need for all the other inhailed meds. right now. Hopefully that is all a long way off for her. Great question!!!

 

[chattyfamily]

What did everyone start Pulmozyme? Is is after a certain # of symptoms or is it an age thing? How do they determine when you need it?

 

[chattyfamily]

What did everyone start Pulmozyme? Is is after a certain # of symptoms or is it an age thing? How do they determine when you need it?

 

[chattyfamily]

What did everyone start Pulmozyme? Is is after a certain # of symptoms or is it an age thing? How do they determine when you need it?

 

[Ratatosk]

Ds was put on it about 1 1/2 years ago, when he was 2 1/2. It wasn't done by our primary CF doctor, but done at the local CF clinic. I suspected at the time it was a drug they put all their patients on because previously we'd answered a survey about a study that clinic does. While I wasn't too thrilled about yet another drug being added to the mix, I did notice that the first time we used it DS's nose ran -- something it never ever did before. It's not a drug his primary doctor routinely puts his patients on, probably because of the costs? But he did say it was a good drug.

Since then I've gotten used to the idea of him being on it. Heard from others who notice a difference mainly if they miss a dose of it. I figure whatever works to keep ds's lungs happy and healthy.

 

[Ratatosk]

Ds was put on it about 1 1/2 years ago, when he was 2 1/2. It wasn't done by our primary CF doctor, but done at the local CF clinic. I suspected at the time it was a drug they put all their patients on because previously we'd answered a survey about a study that clinic does. While I wasn't too thrilled about yet another drug being added to the mix, I did notice that the first time we used it DS's nose ran -- something it never ever did before. It's not a drug his primary doctor routinely puts his patients on, probably because of the costs? But he did say it was a good drug.

Since then I've gotten used to the idea of him being on it. Heard from others who notice a difference mainly if they miss a dose of it. I figure whatever works to keep ds's lungs happy and healthy.

 

[Ratatosk]

Ds was put on it about 1 1/2 years ago, when he was 2 1/2. It wasn't done by our primary CF doctor, but done at the local CF clinic. I suspected at the time it was a drug they put all their patients on because previously we'd answered a survey about a study that clinic does. While I wasn't too thrilled about yet another drug being added to the mix, I did notice that the first time we used it DS's nose ran -- something it never ever did before. It's not a drug his primary doctor routinely puts his patients on, probably because of the costs? But he did say it was a good drug.

Since then I've gotten used to the idea of him being on it. Heard from others who notice a difference mainly if they miss a dose of it. I figure whatever works to keep ds's lungs happy and healthy.

 

[ktsmom]

The answers to your post are going to show the differences in the standards of care across the country, BUT they may also be because of differences in patient's mutations or severity/presence of symptoms?

Or daughter is double DF508 and was diagnosed in August 2006. At her appointment last week I asked the doc: if she HADN'T cultured Pseudomonas aeruginosa ("PA"), would she still be on all of this lung therapy and his answer was YES, he would still have put her on everything she is on, except for the TOBI which is an inhaled antibiotic to treat the PA.

Katy is not really symptomatic for lung issues, but she is on: Albuterol, Hypertonic Saline, Pulmozyme, the Vest, and TOBI 28 on/off. She also takes Zithromax three times a week to treat lung inflamation. In addition she is on the usual: enzymes and Vitamax, and then Prevacid and Ursodiol (for high liver enzyme values). I think that's it.

 

[ktsmom]

The answers to your post are going to show the differences in the standards of care across the country, BUT they may also be because of differences in patient's mutations or severity/presence of symptoms?

Or daughter is double DF508 and was diagnosed in August 2006. At her appointment last week I asked the doc: if she HADN'T cultured Pseudomonas aeruginosa ("PA"), would she still be on all of this lung therapy and his answer was YES, he would still have put her on everything she is on, except for the TOBI which is an inhaled antibiotic to treat the PA.

Katy is not really symptomatic for lung issues, but she is on: Albuterol, Hypertonic Saline, Pulmozyme, the Vest, and TOBI 28 on/off. She also takes Zithromax three times a week to treat lung inflamation. In addition she is on the usual: enzymes and Vitamax, and then Prevacid and Ursodiol (for high liver enzyme values). I think that's it.