New here and question to cf'ers (or parents of)

Chaggie

New member
Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT. With Tobi, anly doing it when she is sick rather than as prescribed will typically result in resistance.

Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.
 

Chaggie

New member
Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT. With Tobi, anly doing it when she is sick rather than as prescribed will typically result in resistance.

Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.
 

Chaggie

New member
Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT. With Tobi, anly doing it when she is sick rather than as prescribed will typically result in resistance.

Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.
 

Chaggie

New member
Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT. With Tobi, anly doing it when she is sick rather than as prescribed will typically result in resistance.

Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT.



Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.</end quote></div>


Chris is 100% correct.

You doing her meds now while she's healthy might add 10 or 20 years to her life.

She is counting on you to do the right thing.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT.



Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.</end quote></div>


Chris is 100% correct.

You doing her meds now while she's healthy might add 10 or 20 years to her life.

She is counting on you to do the right thing.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT.



Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.</end quote></div>


Chris is 100% correct.

You doing her meds now while she's healthy might add 10 or 20 years to her life.

She is counting on you to do the right thing.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT.



Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.</end quote></div>


Chris is 100% correct.

You doing her meds now while she's healthy might add 10 or 20 years to her life.

She is counting on you to do the right thing.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT.



Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.</end quote>


Chris is 100% correct.

You doing her meds now while she's healthy might add 10 or 20 years to her life.

She is counting on you to do the right thing.
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Chaggie</b></i>

Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT.



Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.</end quote>


Chris is 100% correct.

You doing her meds now while she's healthy might add 10 or 20 years to her life.

She is counting on you to do the right thing.
 

rcq925

New member
Welcome!

I really hope you don't get bashed in this thread because you are legitimately asking for peoples answers to your questions.

I am mom to Hayley, who is 3 and has CF. She does not look sick either. She is in the 75th% for weight and in the 50th% for height (but we have worked hard for that weight!) Hayley does 3 treatments per day with her vest for 30 minutes each time, she takes XOpenex Nebs three times per day, nebs Pulmozyme once per day, does FLovent inhaler with the aerochamber 2 times per day, takes Nasonex, Zyrtec, Vitamax all daily. She also takes Creon with all meals and snacks.

This is a lot of meds and treatments for small children, I agree, but I feel they are all necessary and preventative. CF is a progressive disease and a lot of times the bacterias hiding in the lungs are doing silent damage. Hayley luckily has only cultured PA once, but we were VERY agressive in treating it with IV's and I hope it has been truly eradicated, but she had NO SYMPTOMS at all!!! We only knew she had PA because it showed up on her culture. So just because your daughter has no CF symptoms, does not mean that CF is not causing lung damage silently!

I really hope that you will talk with your doctor at your next clinic and get your daughter on a regular regimine of treatments. The younger they get used to them, the easier it will be to make them routine and just part of their normal day.

Good luck!
 

rcq925

New member
Welcome!

I really hope you don't get bashed in this thread because you are legitimately asking for peoples answers to your questions.

I am mom to Hayley, who is 3 and has CF. She does not look sick either. She is in the 75th% for weight and in the 50th% for height (but we have worked hard for that weight!) Hayley does 3 treatments per day with her vest for 30 minutes each time, she takes XOpenex Nebs three times per day, nebs Pulmozyme once per day, does FLovent inhaler with the aerochamber 2 times per day, takes Nasonex, Zyrtec, Vitamax all daily. She also takes Creon with all meals and snacks.

This is a lot of meds and treatments for small children, I agree, but I feel they are all necessary and preventative. CF is a progressive disease and a lot of times the bacterias hiding in the lungs are doing silent damage. Hayley luckily has only cultured PA once, but we were VERY agressive in treating it with IV's and I hope it has been truly eradicated, but she had NO SYMPTOMS at all!!! We only knew she had PA because it showed up on her culture. So just because your daughter has no CF symptoms, does not mean that CF is not causing lung damage silently!

I really hope that you will talk with your doctor at your next clinic and get your daughter on a regular regimine of treatments. The younger they get used to them, the easier it will be to make them routine and just part of their normal day.

Good luck!
 

rcq925

New member
Welcome!

I really hope you don't get bashed in this thread because you are legitimately asking for peoples answers to your questions.

I am mom to Hayley, who is 3 and has CF. She does not look sick either. She is in the 75th% for weight and in the 50th% for height (but we have worked hard for that weight!) Hayley does 3 treatments per day with her vest for 30 minutes each time, she takes XOpenex Nebs three times per day, nebs Pulmozyme once per day, does FLovent inhaler with the aerochamber 2 times per day, takes Nasonex, Zyrtec, Vitamax all daily. She also takes Creon with all meals and snacks.

This is a lot of meds and treatments for small children, I agree, but I feel they are all necessary and preventative. CF is a progressive disease and a lot of times the bacterias hiding in the lungs are doing silent damage. Hayley luckily has only cultured PA once, but we were VERY agressive in treating it with IV's and I hope it has been truly eradicated, but she had NO SYMPTOMS at all!!! We only knew she had PA because it showed up on her culture. So just because your daughter has no CF symptoms, does not mean that CF is not causing lung damage silently!

I really hope that you will talk with your doctor at your next clinic and get your daughter on a regular regimine of treatments. The younger they get used to them, the easier it will be to make them routine and just part of their normal day.

Good luck!
 

rcq925

New member
Welcome!

I really hope you don't get bashed in this thread because you are legitimately asking for peoples answers to your questions.

I am mom to Hayley, who is 3 and has CF. She does not look sick either. She is in the 75th% for weight and in the 50th% for height (but we have worked hard for that weight!) Hayley does 3 treatments per day with her vest for 30 minutes each time, she takes XOpenex Nebs three times per day, nebs Pulmozyme once per day, does FLovent inhaler with the aerochamber 2 times per day, takes Nasonex, Zyrtec, Vitamax all daily. She also takes Creon with all meals and snacks.

This is a lot of meds and treatments for small children, I agree, but I feel they are all necessary and preventative. CF is a progressive disease and a lot of times the bacterias hiding in the lungs are doing silent damage. Hayley luckily has only cultured PA once, but we were VERY agressive in treating it with IV's and I hope it has been truly eradicated, but she had NO SYMPTOMS at all!!! We only knew she had PA because it showed up on her culture. So just because your daughter has no CF symptoms, does not mean that CF is not causing lung damage silently!

I really hope that you will talk with your doctor at your next clinic and get your daughter on a regular regimine of treatments. The younger they get used to them, the easier it will be to make them routine and just part of their normal day.

Good luck!
 

rcq925

New member
Welcome!

I really hope you don't get bashed in this thread because you are legitimately asking for peoples answers to your questions.

I am mom to Hayley, who is 3 and has CF. She does not look sick either. She is in the 75th% for weight and in the 50th% for height (but we have worked hard for that weight!) Hayley does 3 treatments per day with her vest for 30 minutes each time, she takes XOpenex Nebs three times per day, nebs Pulmozyme once per day, does FLovent inhaler with the aerochamber 2 times per day, takes Nasonex, Zyrtec, Vitamax all daily. She also takes Creon with all meals and snacks.

This is a lot of meds and treatments for small children, I agree, but I feel they are all necessary and preventative. CF is a progressive disease and a lot of times the bacterias hiding in the lungs are doing silent damage. Hayley luckily has only cultured PA once, but we were VERY agressive in treating it with IV's and I hope it has been truly eradicated, but she had NO SYMPTOMS at all!!! We only knew she had PA because it showed up on her culture. So just because your daughter has no CF symptoms, does not mean that CF is not causing lung damage silently!

I really hope that you will talk with your doctor at your next clinic and get your daughter on a regular regimine of treatments. The younger they get used to them, the easier it will be to make them routine and just part of their normal day.

Good luck!
 

rcq925

New member
Welcome!

I really hope you don't get bashed in this thread because you are legitimately asking for peoples answers to your questions.

I am mom to Hayley, who is 3 and has CF. She does not look sick either. She is in the 75th% for weight and in the 50th% for height (but we have worked hard for that weight!) Hayley does 3 treatments per day with her vest for 30 minutes each time, she takes XOpenex Nebs three times per day, nebs Pulmozyme once per day, does FLovent inhaler with the aerochamber 2 times per day, takes Nasonex, Zyrtec, Vitamax all daily. She also takes Creon with all meals and snacks.

This is a lot of meds and treatments for small children, I agree, but I feel they are all necessary and preventative. CF is a progressive disease and a lot of times the bacterias hiding in the lungs are doing silent damage. Hayley luckily has only cultured PA once, but we were VERY agressive in treating it with IV's and I hope it has been truly eradicated, but she had NO SYMPTOMS at all!!! We only knew she had PA because it showed up on her culture. So just because your daughter has no CF symptoms, does not mean that CF is not causing lung damage silently!

I really hope that you will talk with your doctor at your next clinic and get your daughter on a regular regimine of treatments. The younger they get used to them, the easier it will be to make them routine and just part of their normal day.

Good luck!
 

Breezy

New member
I agree with everyone here. While I don't have CF, I've got bronchiectasis which requires the same amounts of treatments pretty much as it affects the lungs.

I was a lot like Melissa (Jazzysmom). When i first got diagnosed I rarely did my physio and all that. I was supposed to do it 3 times a day and was lucky if i did it once a week. I always took my meds mind you. But even still, by just not doing physio, i sit here 4 years later, with a lung function of 27% and in need of a tx. All that time i could have been clearing my chest and preventing damage and I didn't, b/c i didn't feel like I needed it. I'm not saying that solely b/c I neglected to do physio strictly, that that's why my lungs are so bad. Either way, needing a tx was probably inevitable for me. But my point is, had i been complient, it could have delayed it a lot longer.

Just b/c your child doesn't look sick, or doesn't act it, or what not, the bottom line is, your child has a disease that needs to be treated and right now the only person who can do that for them, is you. I sincerely hope that for the sake of your child you begin doing them regularly. Silent damage is the worst kind there is.
 

Breezy

New member
I agree with everyone here. While I don't have CF, I've got bronchiectasis which requires the same amounts of treatments pretty much as it affects the lungs.

I was a lot like Melissa (Jazzysmom). When i first got diagnosed I rarely did my physio and all that. I was supposed to do it 3 times a day and was lucky if i did it once a week. I always took my meds mind you. But even still, by just not doing physio, i sit here 4 years later, with a lung function of 27% and in need of a tx. All that time i could have been clearing my chest and preventing damage and I didn't, b/c i didn't feel like I needed it. I'm not saying that solely b/c I neglected to do physio strictly, that that's why my lungs are so bad. Either way, needing a tx was probably inevitable for me. But my point is, had i been complient, it could have delayed it a lot longer.

Just b/c your child doesn't look sick, or doesn't act it, or what not, the bottom line is, your child has a disease that needs to be treated and right now the only person who can do that for them, is you. I sincerely hope that for the sake of your child you begin doing them regularly. Silent damage is the worst kind there is.
 

Breezy

New member
I agree with everyone here. While I don't have CF, I've got bronchiectasis which requires the same amounts of treatments pretty much as it affects the lungs.

I was a lot like Melissa (Jazzysmom). When i first got diagnosed I rarely did my physio and all that. I was supposed to do it 3 times a day and was lucky if i did it once a week. I always took my meds mind you. But even still, by just not doing physio, i sit here 4 years later, with a lung function of 27% and in need of a tx. All that time i could have been clearing my chest and preventing damage and I didn't, b/c i didn't feel like I needed it. I'm not saying that solely b/c I neglected to do physio strictly, that that's why my lungs are so bad. Either way, needing a tx was probably inevitable for me. But my point is, had i been complient, it could have delayed it a lot longer.

Just b/c your child doesn't look sick, or doesn't act it, or what not, the bottom line is, your child has a disease that needs to be treated and right now the only person who can do that for them, is you. I sincerely hope that for the sake of your child you begin doing them regularly. Silent damage is the worst kind there is.
 

Breezy

New member
I agree with everyone here. While I don't have CF, I've got bronchiectasis which requires the same amounts of treatments pretty much as it affects the lungs.

I was a lot like Melissa (Jazzysmom). When i first got diagnosed I rarely did my physio and all that. I was supposed to do it 3 times a day and was lucky if i did it once a week. I always took my meds mind you. But even still, by just not doing physio, i sit here 4 years later, with a lung function of 27% and in need of a tx. All that time i could have been clearing my chest and preventing damage and I didn't, b/c i didn't feel like I needed it. I'm not saying that solely b/c I neglected to do physio strictly, that that's why my lungs are so bad. Either way, needing a tx was probably inevitable for me. But my point is, had i been complient, it could have delayed it a lot longer.

Just b/c your child doesn't look sick, or doesn't act it, or what not, the bottom line is, your child has a disease that needs to be treated and right now the only person who can do that for them, is you. I sincerely hope that for the sake of your child you begin doing them regularly. Silent damage is the worst kind there is.
 
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