Why such different treatments

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.
 

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.
 

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.
 

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" Which part of the curve does your CF physician lie? </u>



.
 

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" Which part of the curve does your CF physician lie? </u>



.
 

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" Which part of the curve does your CF physician lie? </u>



.
 

amber682

New member
I think a lot of doctors are very pro-active with the children with CF. They want to prevent lung damage from the very beginning. As for the meds your daughter is on, it doesn't seem excessive to me. My 2 year old son is on all of the same meds except he doesn't take ursodial, I don't know what that is for even. But he does duoneb (like albuterol) 2x a day, and pulmozyme once. He takes a vitamin, enzymes, zantac for reflux, and periactin for his appetite. We do chest PT 15-20 min. 2x a day. He also does an inhaler 2x a day. And so far, my son has not had many problems at all. He's only been hospitalized twice, once before diagnosis, and once to put in a PICC line for home IV's. He doesn't have a lot of lung damage, so it's not like he has a very severe or advanced case.

Your routine sounds pretty average for a child with CF. It's all about preventative care. It's pretty much like this (and anyone correct me if I'm wrong!): the albuterol opens up the airways, the pulmozyme thins the mucus by breaking it up, the chest PT loosens it and moves it around, and then coughing would bring it up out of the lungs. Alot of young kids, like my son, don't even cough when doing CPT.

It sounds like it's just that you have pro-active doctors, focused on preventing lung damage in the first place. I also think sometimes that my son has to do an awful lot of medicines (compared to a person without CF), but it really is worth it. You might be able to ask the doctors about duoneb instead of albuterol. It is two meds combined, one faster acting and one longer lasting. It may make it so you don't have to do the third albuterol treatment, could save you a few minutes.
 

amber682

New member
I think a lot of doctors are very pro-active with the children with CF. They want to prevent lung damage from the very beginning. As for the meds your daughter is on, it doesn't seem excessive to me. My 2 year old son is on all of the same meds except he doesn't take ursodial, I don't know what that is for even. But he does duoneb (like albuterol) 2x a day, and pulmozyme once. He takes a vitamin, enzymes, zantac for reflux, and periactin for his appetite. We do chest PT 15-20 min. 2x a day. He also does an inhaler 2x a day. And so far, my son has not had many problems at all. He's only been hospitalized twice, once before diagnosis, and once to put in a PICC line for home IV's. He doesn't have a lot of lung damage, so it's not like he has a very severe or advanced case.

Your routine sounds pretty average for a child with CF. It's all about preventative care. It's pretty much like this (and anyone correct me if I'm wrong!): the albuterol opens up the airways, the pulmozyme thins the mucus by breaking it up, the chest PT loosens it and moves it around, and then coughing would bring it up out of the lungs. Alot of young kids, like my son, don't even cough when doing CPT.

It sounds like it's just that you have pro-active doctors, focused on preventing lung damage in the first place. I also think sometimes that my son has to do an awful lot of medicines (compared to a person without CF), but it really is worth it. You might be able to ask the doctors about duoneb instead of albuterol. It is two meds combined, one faster acting and one longer lasting. It may make it so you don't have to do the third albuterol treatment, could save you a few minutes.
 

amber682

New member
I think a lot of doctors are very pro-active with the children with CF. They want to prevent lung damage from the very beginning. As for the meds your daughter is on, it doesn't seem excessive to me. My 2 year old son is on all of the same meds except he doesn't take ursodial, I don't know what that is for even. But he does duoneb (like albuterol) 2x a day, and pulmozyme once. He takes a vitamin, enzymes, zantac for reflux, and periactin for his appetite. We do chest PT 15-20 min. 2x a day. He also does an inhaler 2x a day. And so far, my son has not had many problems at all. He's only been hospitalized twice, once before diagnosis, and once to put in a PICC line for home IV's. He doesn't have a lot of lung damage, so it's not like he has a very severe or advanced case.

Your routine sounds pretty average for a child with CF. It's all about preventative care. It's pretty much like this (and anyone correct me if I'm wrong!): the albuterol opens up the airways, the pulmozyme thins the mucus by breaking it up, the chest PT loosens it and moves it around, and then coughing would bring it up out of the lungs. Alot of young kids, like my son, don't even cough when doing CPT.

It sounds like it's just that you have pro-active doctors, focused on preventing lung damage in the first place. I also think sometimes that my son has to do an awful lot of medicines (compared to a person without CF), but it really is worth it. You might be able to ask the doctors about duoneb instead of albuterol. It is two meds combined, one faster acting and one longer lasting. It may make it so you don't have to do the third albuterol treatment, could save you a few minutes.
 

eli

New member
Oh, how i wish i could answer this question for all mums of cfer's and cf'ers. I ask myself this all the time.

Well we are on the total opposite end of the scale.Our daughter is oonly on enzymes 3 per meal, Flopen 2 x a day and cpt once a day. Thats it.

I'm, always questioning our docs are we doing enough? Do we need to do more, as i have seen many chn on this site are on much more meds then she has ever been on<img src="i/expressions/face-icon-small-confused.gif" border="0">.

Oh, i don't know what else to say *sigh*
 

eli

New member
Oh, how i wish i could answer this question for all mums of cfer's and cf'ers. I ask myself this all the time.

Well we are on the total opposite end of the scale.Our daughter is oonly on enzymes 3 per meal, Flopen 2 x a day and cpt once a day. Thats it.

I'm, always questioning our docs are we doing enough? Do we need to do more, as i have seen many chn on this site are on much more meds then she has ever been on<img src="i/expressions/face-icon-small-confused.gif" border="0">.

Oh, i don't know what else to say *sigh*
 

eli

New member
Oh, how i wish i could answer this question for all mums of cfer's and cf'ers. I ask myself this all the time.

Well we are on the total opposite end of the scale.Our daughter is oonly on enzymes 3 per meal, Flopen 2 x a day and cpt once a day. Thats it.

I'm, always questioning our docs are we doing enough? Do we need to do more, as i have seen many chn on this site are on much more meds then she has ever been on<img src="i/expressions/face-icon-small-confused.gif" border="0">.

Oh, i don't know what else to say *sigh*
 

Samsmom

New member
This is a question that I have pondered myself. My daughter is on enzymes, vitamins, calcium, zinc, nasonex, singulair, sometimes sudafed for sinus flair ups she does acapella 2x daily and we have a nebulizer with plain albuterol as needed. Also she as an inhaler as needed. Most of her problems are sinus and digestive related. I guess the treatment is individual like the kid.
 

Samsmom

New member
This is a question that I have pondered myself. My daughter is on enzymes, vitamins, calcium, zinc, nasonex, singulair, sometimes sudafed for sinus flair ups she does acapella 2x daily and we have a nebulizer with plain albuterol as needed. Also she as an inhaler as needed. Most of her problems are sinus and digestive related. I guess the treatment is individual like the kid.
 

Samsmom

New member
This is a question that I have pondered myself. My daughter is on enzymes, vitamins, calcium, zinc, nasonex, singulair, sometimes sudafed for sinus flair ups she does acapella 2x daily and we have a nebulizer with plain albuterol as needed. Also she as an inhaler as needed. Most of her problems are sinus and digestive related. I guess the treatment is individual like the kid.
 

wuffles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>
Well we are on the total opposite end of the scale.Our daughter is oonly on enzymes 3 per meal, Flopen 2 x a day and cpt once a day. Thats it.</end quote></div>

Enzymes, vitamins, sinus stuff and 1x day CPT is all I have every done except when I am sick. Some people call me crazy... but I've done ok, and it's the way I like it for now.

It's much harder making the decision for your child. When you're an adult you can make your own choices...
 

wuffles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>
Well we are on the total opposite end of the scale.Our daughter is oonly on enzymes 3 per meal, Flopen 2 x a day and cpt once a day. Thats it.</end quote></div>

Enzymes, vitamins, sinus stuff and 1x day CPT is all I have every done except when I am sick. Some people call me crazy... but I've done ok, and it's the way I like it for now.

It's much harder making the decision for your child. When you're an adult you can make your own choices...
 

wuffles

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>
Well we are on the total opposite end of the scale.Our daughter is oonly on enzymes 3 per meal, Flopen 2 x a day and cpt once a day. Thats it.</end quote></div>

Enzymes, vitamins, sinus stuff and 1x day CPT is all I have every done except when I am sick. Some people call me crazy... but I've done ok, and it's the way I like it for now.

It's much harder making the decision for your child. When you're an adult you can make your own choices...
 
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