Why such variation in med's and treatments

[NoExcuses]

What might give you a good perspective is reading Dr. Warwick's Letter to me (he's the head of the CF clinic whose patients live the longest).

Click on my blog, scroll down to the bottom to where it says "categories." Click "Warwick's Letter" next. It's a long read, but worth it. It's a great way to understand how this CF doc treats his patients so successfully.

 

[NoExcuses]

What might give you a good perspective is reading Dr. Warwick's Letter to me (he's the head of the CF clinic whose patients live the longest).

Click on my blog, scroll down to the bottom to where it says "categories." Click "Warwick's Letter" next. It's a long read, but worth it. It's a great way to understand how this CF doc treats his patients so successfully.

 

[chattyfamily]

I have read the letter already. I have read a lot of your blog. It seems like you are one that does a lot of research and has a lot of information. I don't know much of your background other than you have CF, but for me as a parent new to CF, I have a hard time understanding all of the letter. Maybe it is because I have not heard of many of these medicines or treatments. Our Dr. is going to get Porter the vest as soon as he is big enough, so we are in agreement about that. Should I wait and research the treatments his Drs. suggest as we go along, or should I print the letter out and take it in so they can sort through it with me? I have two other kids and feel overwhelmed as it is. Is it naive of me to go along with Drs. and trust them 100%? How do i question when i don't even know what I am talking about? Where do i find the time to devote to the mountains of info and studies and research and then make sense of it all? I feel like the ins and outs of this disease are way over my head. Maybe this is just how everyone feels in the beginning and I will become a well versed CF mom before I know it. I just want to do what is best for Porter and not miss anything that could help.

 

[chattyfamily]

I have read the letter already. I have read a lot of your blog. It seems like you are one that does a lot of research and has a lot of information. I don't know much of your background other than you have CF, but for me as a parent new to CF, I have a hard time understanding all of the letter. Maybe it is because I have not heard of many of these medicines or treatments. Our Dr. is going to get Porter the vest as soon as he is big enough, so we are in agreement about that. Should I wait and research the treatments his Drs. suggest as we go along, or should I print the letter out and take it in so they can sort through it with me? I have two other kids and feel overwhelmed as it is. Is it naive of me to go along with Drs. and trust them 100%? How do i question when i don't even know what I am talking about? Where do i find the time to devote to the mountains of info and studies and research and then make sense of it all? I feel like the ins and outs of this disease are way over my head. Maybe this is just how everyone feels in the beginning and I will become a well versed CF mom before I know it. I just want to do what is best for Porter and not miss anything that could help.

 

[chattyfamily]

I have read the letter already. I have read a lot of your blog. It seems like you are one that does a lot of research and has a lot of information. I don't know much of your background other than you have CF, but for me as a parent new to CF, I have a hard time understanding all of the letter. Maybe it is because I have not heard of many of these medicines or treatments. Our Dr. is going to get Porter the vest as soon as he is big enough, so we are in agreement about that. Should I wait and research the treatments his Drs. suggest as we go along, or should I print the letter out and take it in so they can sort through it with me? I have two other kids and feel overwhelmed as it is. Is it naive of me to go along with Drs. and trust them 100%? How do i question when i don't even know what I am talking about? Where do i find the time to devote to the mountains of info and studies and research and then make sense of it all? I feel like the ins and outs of this disease are way over my head. Maybe this is just how everyone feels in the beginning and I will become a well versed CF mom before I know it. I just want to do what is best for Porter and not miss anything that could help.

 

[NoExcuses]

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

I have read the letter already. I have read a lot of your blog. It seems like you are one that does a lot of research and has a lot of information. I don't know much of your background other than you have CF, but for me as a parent new to CF, I have a hard time understanding all of the letter.

</end quote></div>


It's difficult. My background is business - not anything scientific. But having lived with this disease for 25 years it's been a crash course in science. I am a strong believer that no one has a greater interest in my health than me. My mom felt the same way that you did, so you're not alone. It's just something that comes with time and not being shy to ask lots of questions.



<div class="FTQUOTE"><begin quote>Maybe it is because I have not heard of many of these medicines or treatments. </end quote></div>

Do this. Go through the letter, line by line, and start a thread to ask questions. I guarentee that you are not the only one who has questions. Even if it's 40 posts in the same thread asking questions, myself and others would be thrilled to help.

Education prolongs life. That's the bottomline.


<div class="FTQUOTE"><begin quote>Our Dr. is going to get Porter the vest as soon as he is big enough, so we are in agreement about that. </end quote></div>

If you read the letter then you know that your son is big enough <b> now </b>. Get the Respirtech Vest (not the HillRom) at your next appointment. The time is now.

<div class="FTQUOTE"><begin quote> Should I wait and research the treatments his Drs. suggest as we go along, or should I print the letter out and take it in so they can sort through it with me? </end quote></div>

I would do both. Print the sucker out and ask the doc why he agrees or disagrees with Warwick.

Then post questions about the letter on this forum and let us help you.

<u> This learning process is a marathon, not a sprint </u> The more and more you talk with us on the board and your doc about CF stuff, the more the pieces will fit together. But you have to start somewhere. So let's get the dialogue started <img src="i/expressions/face-icon-small-smile.gif" border="0">

<div class="FTQUOTE"><begin quote>Is it naive of me to go along with Drs. and trust them 100%? </end quote></div>

A bit. There is just a huge variation in treatment, and you want to make sure you get the best out there (have you read the Bell Curve article in my signature?).
But like you said, you don't know what to question yet. This is why educating yourself, as you're doing right now, is fabulous. It's a great 1st step. And being on this board is a great sign.

<div class="FTQUOTE"><begin quote> Where do i find the time to devote to the mountains of info and studies and research and then make sense of it all? </end quote></div>

Maybe commit to a section of the Warwick letter a week. Just a section. Usually it's about a few paragraphs. Just copy and paste just those few paragraphs and try to read it line by line. Then post when you have questions and we'll all chime in to help you understand.

Just take small bites and before you know it, you will have a good grasp of what's going on.


<b> FIGHT ON </b>

 

[NoExcuses]

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

I have read the letter already. I have read a lot of your blog. It seems like you are one that does a lot of research and has a lot of information. I don't know much of your background other than you have CF, but for me as a parent new to CF, I have a hard time understanding all of the letter.

</end quote></div>


It's difficult. My background is business - not anything scientific. But having lived with this disease for 25 years it's been a crash course in science. I am a strong believer that no one has a greater interest in my health than me. My mom felt the same way that you did, so you're not alone. It's just something that comes with time and not being shy to ask lots of questions.



<div class="FTQUOTE"><begin quote>Maybe it is because I have not heard of many of these medicines or treatments. </end quote></div>

Do this. Go through the letter, line by line, and start a thread to ask questions. I guarentee that you are not the only one who has questions. Even if it's 40 posts in the same thread asking questions, myself and others would be thrilled to help.

Education prolongs life. That's the bottomline.


<div class="FTQUOTE"><begin quote>Our Dr. is going to get Porter the vest as soon as he is big enough, so we are in agreement about that. </end quote></div>

If you read the letter then you know that your son is big enough <b> now </b>. Get the Respirtech Vest (not the HillRom) at your next appointment. The time is now.

<div class="FTQUOTE"><begin quote> Should I wait and research the treatments his Drs. suggest as we go along, or should I print the letter out and take it in so they can sort through it with me? </end quote></div>

I would do both. Print the sucker out and ask the doc why he agrees or disagrees with Warwick.

Then post questions about the letter on this forum and let us help you.

<u> This learning process is a marathon, not a sprint </u> The more and more you talk with us on the board and your doc about CF stuff, the more the pieces will fit together. But you have to start somewhere. So let's get the dialogue started <img src="i/expressions/face-icon-small-smile.gif" border="0">

<div class="FTQUOTE"><begin quote>Is it naive of me to go along with Drs. and trust them 100%? </end quote></div>

A bit. There is just a huge variation in treatment, and you want to make sure you get the best out there (have you read the Bell Curve article in my signature?).
But like you said, you don't know what to question yet. This is why educating yourself, as you're doing right now, is fabulous. It's a great 1st step. And being on this board is a great sign.

<div class="FTQUOTE"><begin quote> Where do i find the time to devote to the mountains of info and studies and research and then make sense of it all? </end quote></div>

Maybe commit to a section of the Warwick letter a week. Just a section. Usually it's about a few paragraphs. Just copy and paste just those few paragraphs and try to read it line by line. Then post when you have questions and we'll all chime in to help you understand.

Just take small bites and before you know it, you will have a good grasp of what's going on.


<b> FIGHT ON </b>

 

[NoExcuses]

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

I have read the letter already. I have read a lot of your blog. It seems like you are one that does a lot of research and has a lot of information. I don't know much of your background other than you have CF, but for me as a parent new to CF, I have a hard time understanding all of the letter.

</end quote></div>


It's difficult. My background is business - not anything scientific. But having lived with this disease for 25 years it's been a crash course in science. I am a strong believer that no one has a greater interest in my health than me. My mom felt the same way that you did, so you're not alone. It's just something that comes with time and not being shy to ask lots of questions.



<div class="FTQUOTE"><begin quote>Maybe it is because I have not heard of many of these medicines or treatments. </end quote></div>

Do this. Go through the letter, line by line, and start a thread to ask questions. I guarentee that you are not the only one who has questions. Even if it's 40 posts in the same thread asking questions, myself and others would be thrilled to help.

Education prolongs life. That's the bottomline.


<div class="FTQUOTE"><begin quote>Our Dr. is going to get Porter the vest as soon as he is big enough, so we are in agreement about that. </end quote></div>

If you read the letter then you know that your son is big enough <b> now </b>. Get the Respirtech Vest (not the HillRom) at your next appointment. The time is now.

<div class="FTQUOTE"><begin quote> Should I wait and research the treatments his Drs. suggest as we go along, or should I print the letter out and take it in so they can sort through it with me? </end quote></div>

I would do both. Print the sucker out and ask the doc why he agrees or disagrees with Warwick.

Then post questions about the letter on this forum and let us help you.

<u> This learning process is a marathon, not a sprint </u> The more and more you talk with us on the board and your doc about CF stuff, the more the pieces will fit together. But you have to start somewhere. So let's get the dialogue started <img src="i/expressions/face-icon-small-smile.gif" border="0">

<div class="FTQUOTE"><begin quote>Is it naive of me to go along with Drs. and trust them 100%? </end quote></div>

A bit. There is just a huge variation in treatment, and you want to make sure you get the best out there (have you read the Bell Curve article in my signature?).
But like you said, you don't know what to question yet. This is why educating yourself, as you're doing right now, is fabulous. It's a great 1st step. And being on this board is a great sign.

<div class="FTQUOTE"><begin quote> Where do i find the time to devote to the mountains of info and studies and research and then make sense of it all? </end quote></div>

Maybe commit to a section of the Warwick letter a week. Just a section. Usually it's about a few paragraphs. Just copy and paste just those few paragraphs and try to read it line by line. Then post when you have questions and we'll all chime in to help you understand.

Just take small bites and before you know it, you will have a good grasp of what's going on.


<b> FIGHT ON </b>

 

[wuffles]

I'm sure I already replied to this!

I have come from the other spectrum of doctors who never treated aggressively. I am on relatively few medications -- mainly sinus stuff, enzymes, asthma puffers and vitamins. No Pulmozyme, no Tobi, no vest, etc.

That is what works for me at this point, and I am not afraid to speak up to my doctor if I think I need more. It's harder to make these decisions when it's your child, but I think you need a good balance, and a good balance is a different mix for everyone.

 

[wuffles]

I'm sure I already replied to this!

I have come from the other spectrum of doctors who never treated aggressively. I am on relatively few medications -- mainly sinus stuff, enzymes, asthma puffers and vitamins. No Pulmozyme, no Tobi, no vest, etc.

That is what works for me at this point, and I am not afraid to speak up to my doctor if I think I need more. It's harder to make these decisions when it's your child, but I think you need a good balance, and a good balance is a different mix for everyone.

 

[wuffles]

I'm sure I already replied to this!

I have come from the other spectrum of doctors who never treated aggressively. I am on relatively few medications -- mainly sinus stuff, enzymes, asthma puffers and vitamins. No Pulmozyme, no Tobi, no vest, etc.

That is what works for me at this point, and I am not afraid to speak up to my doctor if I think I need more. It's harder to make these decisions when it's your child, but I think you need a good balance, and a good balance is a different mix for everyone.

 

[eli]

Amy, i hope you were not refering to me and/or our clinic in this comment because if you are you are totaly wrong about it my dear.<div class="FTQUOTE"><begin quote>I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die. </end quote></div>

It seems that you are, but have only changed the age of the child, i refuse to explain myslef again and again about this same topic and your idea of it being, its because we have socialised medicine.

Please correct me if im wrong!

Edited to add: Sorry to the original poster, i forgot to mention that i posted my answer to the same thread in the adult section.

 

[eli]

Amy, i hope you were not refering to me and/or our clinic in this comment because if you are you are totaly wrong about it my dear.<div class="FTQUOTE"><begin quote>I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die. </end quote></div>

It seems that you are, but have only changed the age of the child, i refuse to explain myslef again and again about this same topic and your idea of it being, its because we have socialised medicine.

Please correct me if im wrong!

Edited to add: Sorry to the original poster, i forgot to mention that i posted my answer to the same thread in the adult section.

 

[eli]

Amy, i hope you were not refering to me and/or our clinic in this comment because if you are you are totaly wrong about it my dear.<div class="FTQUOTE"><begin quote>I heard a story the other night from a family outside the US... the 1 year old is sick but they don't even know what the kid is colonized with because gov't won't do a sputum culture or bronchoscopy. Stories like that just make me want to die. </end quote></div>

It seems that you are, but have only changed the age of the child, i refuse to explain myslef again and again about this same topic and your idea of it being, its because we have socialised medicine.

Please correct me if im wrong!

Edited to add: Sorry to the original poster, i forgot to mention that i posted my answer to the same thread in the adult section.

 

[Ratatosk]

Your child is most likely old/large enough for the vest. I know of several 1 year olds who now have them.

When I go to the clinic, I write down a list of questions to ask. Otherwise I might get sidetracked and forget. I also write down what the doctors are telling us. Otherwise, I might forget. Questions in the past were regarding hypertonic saline vs. pulmozyme, getting the vest.

Our last clinic visit I think my only question had to do with his vitamin drops, whether he needed to increase them when he turned 4. Items I wrote down that the doctor discussed what having a Factor 2 test (liver function) and a cholesterol test (measure of nutrition) when he has his labs next time. And also when he has his next appointment in the City, they're planning to do a CT scan with him inhaling a radioactive isotope via a nebulizer to check his small airways.

The most recent drugs that were added to DS' routine were zithromax and pulmozyme a year and a half a go. I hate the idea of "oh, no not another med", but looking at the big picture -- gotta do what we can to keep his lungs happy and healthy.

 

[Ratatosk]

Your child is most likely old/large enough for the vest. I know of several 1 year olds who now have them.

When I go to the clinic, I write down a list of questions to ask. Otherwise I might get sidetracked and forget. I also write down what the doctors are telling us. Otherwise, I might forget. Questions in the past were regarding hypertonic saline vs. pulmozyme, getting the vest.

Our last clinic visit I think my only question had to do with his vitamin drops, whether he needed to increase them when he turned 4. Items I wrote down that the doctor discussed what having a Factor 2 test (liver function) and a cholesterol test (measure of nutrition) when he has his labs next time. And also when he has his next appointment in the City, they're planning to do a CT scan with him inhaling a radioactive isotope via a nebulizer to check his small airways.

The most recent drugs that were added to DS' routine were zithromax and pulmozyme a year and a half a go. I hate the idea of "oh, no not another med", but looking at the big picture -- gotta do what we can to keep his lungs happy and healthy.

 

[Ratatosk]

Your child is most likely old/large enough for the vest. I know of several 1 year olds who now have them.

When I go to the clinic, I write down a list of questions to ask. Otherwise I might get sidetracked and forget. I also write down what the doctors are telling us. Otherwise, I might forget. Questions in the past were regarding hypertonic saline vs. pulmozyme, getting the vest.

Our last clinic visit I think my only question had to do with his vitamin drops, whether he needed to increase them when he turned 4. Items I wrote down that the doctor discussed what having a Factor 2 test (liver function) and a cholesterol test (measure of nutrition) when he has his labs next time. And also when he has his next appointment in the City, they're planning to do a CT scan with him inhaling a radioactive isotope via a nebulizer to check his small airways.

The most recent drugs that were added to DS' routine were zithromax and pulmozyme a year and a half a go. I hate the idea of "oh, no not another med", but looking at the big picture -- gotta do what we can to keep his lungs happy and healthy.

 

[LouLou]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
they're planning to do a CT scan with him inhaling a radioactive isotope via a nebulizer to check his small airways.

</end quote></div>

Sounds lovely.

Liza, what are the long term <b>side effects</b> of inhaling this matter?

What are the <b>benefits</b> of "checking his small airways" and how might your child's care really change... it seems you are already doing a very proactive approach and I can't think of anything besides nucking him with IV antis that could be added.

Benefits?
Risks?
Alternatives?
Intuition?
N (I don't remember this one sorry)

 

[LouLou]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
they're planning to do a CT scan with him inhaling a radioactive isotope via a nebulizer to check his small airways.

</end quote></div>

Sounds lovely.

Liza, what are the long term <b>side effects</b> of inhaling this matter?

What are the <b>benefits</b> of "checking his small airways" and how might your child's care really change... it seems you are already doing a very proactive approach and I can't think of anything besides nucking him with IV antis that could be added.

Benefits?
Risks?
Alternatives?
Intuition?
N (I don't remember this one sorry)

 

[LouLou]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
they're planning to do a CT scan with him inhaling a radioactive isotope via a nebulizer to check his small airways.

</end quote></div>

Sounds lovely.

Liza, what are the long term <b>side effects</b> of inhaling this matter?

What are the <b>benefits</b> of "checking his small airways" and how might your child's care really change... it seems you are already doing a very proactive approach and I can't think of anything besides nucking him with IV antis that could be added.

Benefits?
Risks?
Alternatives?
Intuition?
N (I don't remember this one sorry)