Why such variation in med's and treatments

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creation301

New member
I have read on this forum several times about the differences in treatments and medicines for different people. I see some that only do neb's when they are sick, and enzymes and then others like my daughter that does so much (I think every medicine out there related to CF it seems at times). I often wonder if this is because she has a more developed case of CF or if it is just what her particualar dr's do? She is on albuterol 2-3x a day, pulmizyme, cpt 2-3x, ursodial, vit, enzymes, periactin, and prevacid. What do you think? Is it the doctors or is it her body. Lately she has been doing really well. We are thankful!! But it still seems like a lot for a 21 month old.
 
C

creation301

New member
I have read on this forum several times about the differences in treatments and medicines for different people. I see some that only do neb's when they are sick, and enzymes and then others like my daughter that does so much (I think every medicine out there related to CF it seems at times). I often wonder if this is because she has a more developed case of CF or if it is just what her particualar dr's do? She is on albuterol 2-3x a day, pulmizyme, cpt 2-3x, ursodial, vit, enzymes, periactin, and prevacid. What do you think? Is it the doctors or is it her body. Lately she has been doing really well. We are thankful!! But it still seems like a lot for a 21 month old.
 
C

creation301

New member
I have read on this forum several times about the differences in treatments and medicines for different people. I see some that only do neb's when they are sick, and enzymes and then others like my daughter that does so much (I think every medicine out there related to CF it seems at times). I often wonder if this is because she has a more developed case of CF or if it is just what her particualar dr's do? She is on albuterol 2-3x a day, pulmizyme, cpt 2-3x, ursodial, vit, enzymes, periactin, and prevacid. What do you think? Is it the doctors or is it her body. Lately she has been doing really well. We are thankful!! But it still seems like a lot for a 21 month old.
 
E

Emily65Roses

New member
It'll be doctors and what they think is the right path. Her PFTs and where they are. What bacteria she may be culturing. Whether or not the bacteria is sporadic, or chronic. How her weight is. Etc.

I know I'm an adult, so it's not an even comparison, but a lot of us are on a whole mess of stuff. Just so you can see, this is my list:

Albuterol (inhaler)
Pulmozyme (neb)
Colistin (neb)
Hypertonic saline (neb)
Nasacort (nose spray)
ADEKs (soon ABDEKs - vitamins)
Ultrase MT 20s (enzymes)
Nexium (that's for acid reflux)
I get CPT for one half hour at night every night; my fiance pounds my back.

I'm also on some other stuff, but it's not directly related, really.
 
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Emily65Roses

New member
It'll be doctors and what they think is the right path. Her PFTs and where they are. What bacteria she may be culturing. Whether or not the bacteria is sporadic, or chronic. How her weight is. Etc.

I know I'm an adult, so it's not an even comparison, but a lot of us are on a whole mess of stuff. Just so you can see, this is my list:

Albuterol (inhaler)
Pulmozyme (neb)
Colistin (neb)
Hypertonic saline (neb)
Nasacort (nose spray)
ADEKs (soon ABDEKs - vitamins)
Ultrase MT 20s (enzymes)
Nexium (that's for acid reflux)
I get CPT for one half hour at night every night; my fiance pounds my back.

I'm also on some other stuff, but it's not directly related, really.
 
E

Emily65Roses

New member
It'll be doctors and what they think is the right path. Her PFTs and where they are. What bacteria she may be culturing. Whether or not the bacteria is sporadic, or chronic. How her weight is. Etc.

I know I'm an adult, so it's not an even comparison, but a lot of us are on a whole mess of stuff. Just so you can see, this is my list:

Albuterol (inhaler)
Pulmozyme (neb)
Colistin (neb)
Hypertonic saline (neb)
Nasacort (nose spray)
ADEKs (soon ABDEKs - vitamins)
Ultrase MT 20s (enzymes)
Nexium (that's for acid reflux)
I get CPT for one half hour at night every night; my fiance pounds my back.

I'm also on some other stuff, but it's not directly related, really.
 
M

Mockingbird

New member
It has more to do with the doctors. Some doctors like to treat CF aggressively, in order to prevent infection from occuring and to keep lung function up. Other doctors take a more passive approach.

Since she is so young, a more aggressive approach is probably best for now. Personally, for myself as an adult, I prefer the more passive approach, so I can have a life away from my nebulizer!
 
M

Mockingbird

New member
It has more to do with the doctors. Some doctors like to treat CF aggressively, in order to prevent infection from occuring and to keep lung function up. Other doctors take a more passive approach.

Since she is so young, a more aggressive approach is probably best for now. Personally, for myself as an adult, I prefer the more passive approach, so I can have a life away from my nebulizer!
 
M

Mockingbird

New member
It has more to do with the doctors. Some doctors like to treat CF aggressively, in order to prevent infection from occuring and to keep lung function up. Other doctors take a more passive approach.

Since she is so young, a more aggressive approach is probably best for now. Personally, for myself as an adult, I prefer the more passive approach, so I can have a life away from my nebulizer!
 
N

NoExcuses

New member
The bottomline is this: so few people in the US have CF.

So there aren't widely agreed upon or published guidelines on how to treat the disease like there are with diabetes, heart disesase, etc. But really, even with those diseases, treatment varies widely.

Many docs are realizing that preventing problems with CF is the way to prolong life instead of treating problems when they arise.

Some doctors are well educated on CF (even at CF Centers) and others are behind the times.

<u> Read the article in my signature called the "Bell Curve" </u> Which part of the curve does your CF physician lie?
 
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NoExcuses

New member
The bottomline is this: so few people in the US have CF.

So there aren't widely agreed upon or published guidelines on how to treat the disease like there are with diabetes, heart disesase, etc. But really, even with those diseases, treatment varies widely.

Many docs are realizing that preventing problems with CF is the way to prolong life instead of treating problems when they arise.

Some doctors are well educated on CF (even at CF Centers) and others are behind the times.

<u> Read the article in my signature called the "Bell Curve" </u> Which part of the curve does your CF physician lie?
 
N

NoExcuses

New member
The bottomline is this: so few people in the US have CF.

So there aren't widely agreed upon or published guidelines on how to treat the disease like there are with diabetes, heart disesase, etc. But really, even with those diseases, treatment varies widely.

Many docs are realizing that preventing problems with CF is the way to prolong life instead of treating problems when they arise.

Some doctors are well educated on CF (even at CF Centers) and others are behind the times.

<u> Read the article in my signature called the "Bell Curve" </u> Which part of the curve does your CF physician lie?
 
S

sdavis227

New member
Okay, this post has me somewhat worried. Even though Parker is only 2 months, should he be doing more than his enzymes, CPT, and albuterol only when he's got a cough?? What do all the other neb meds do?
 
S

sdavis227

New member
Okay, this post has me somewhat worried. Even though Parker is only 2 months, should he be doing more than his enzymes, CPT, and albuterol only when he's got a cough?? What do all the other neb meds do?
 
S

sdavis227

New member
Okay, this post has me somewhat worried. Even though Parker is only 2 months, should he be doing more than his enzymes, CPT, and albuterol only when he's got a cough?? What do all the other neb meds do?
 
I

izemmom

New member
Shannon - the only thing I would say is a "must add" would be some sort of vitamin that is fourmlated for cf patients. Ask your doctors about that. Otherwise, if there is nothing else to treat, in the dr.s opinion, then he won't be on other meds. When chest x-rays start to show that he needs it, they will likely prescribe pulomzyme or another mucolic. If he cultures psuedomonas (I hope he won't!!!) they'll have you do TOBI...right now, they are giving him what he needs. Keep reading so you know what to watch for and be in regular contact with the doctors. Good Luck on this journey...I"m glad you are here.


Originial poster, I wonder this a lot, too. We have become friendly with a local family who's daughter also has cf (shes only 3 wks older than Emily!!!!) We share a pulmonologist. But, the course of their care has been pretty different, even though we moms feel they have had similar histories. I worry, but I'd go nuts if I second guessed every little things. I jsut keep an eye on things, question the docs if what they want us to do isn't working...and I read ALOT! on here to keep up with what others are doing. Good luck!
 
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izemmom

New member
Shannon - the only thing I would say is a "must add" would be some sort of vitamin that is fourmlated for cf patients. Ask your doctors about that. Otherwise, if there is nothing else to treat, in the dr.s opinion, then he won't be on other meds. When chest x-rays start to show that he needs it, they will likely prescribe pulomzyme or another mucolic. If he cultures psuedomonas (I hope he won't!!!) they'll have you do TOBI...right now, they are giving him what he needs. Keep reading so you know what to watch for and be in regular contact with the doctors. Good Luck on this journey...I"m glad you are here.


Originial poster, I wonder this a lot, too. We have become friendly with a local family who's daughter also has cf (shes only 3 wks older than Emily!!!!) We share a pulmonologist. But, the course of their care has been pretty different, even though we moms feel they have had similar histories. I worry, but I'd go nuts if I second guessed every little things. I jsut keep an eye on things, question the docs if what they want us to do isn't working...and I read ALOT! on here to keep up with what others are doing. Good luck!
 
I

izemmom

New member
Shannon - the only thing I would say is a "must add" would be some sort of vitamin that is fourmlated for cf patients. Ask your doctors about that. Otherwise, if there is nothing else to treat, in the dr.s opinion, then he won't be on other meds. When chest x-rays start to show that he needs it, they will likely prescribe pulomzyme or another mucolic. If he cultures psuedomonas (I hope he won't!!!) they'll have you do TOBI...right now, they are giving him what he needs. Keep reading so you know what to watch for and be in regular contact with the doctors. Good Luck on this journey...I"m glad you are here.


Originial poster, I wonder this a lot, too. We have become friendly with a local family who's daughter also has cf (shes only 3 wks older than Emily!!!!) We share a pulmonologist. But, the course of their care has been pretty different, even though we moms feel they have had similar histories. I worry, but I'd go nuts if I second guessed every little things. I jsut keep an eye on things, question the docs if what they want us to do isn't working...and I read ALOT! on here to keep up with what others are doing. Good luck!
 
S

sdavis227

New member
Sorry, he is also on the CF Source ABDEK vitamins twice a day. . . Thanks for your post Tami. . . makes me feel better.
 
S

sdavis227

New member
Sorry, he is also on the CF Source ABDEK vitamins twice a day. . . Thanks for your post Tami. . . makes me feel better.
 
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