Frustrated

[saveferris2009]

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

I know a parent from our area, who was a nurse, had heard that we've done CPT since day one and went to the RT department and asked them to show her how to do it, since the local cf clinic viewed it as necessary only IF there are symptoms.</end quote></div>

which is exactly why life expectancies vary so much across the US and the world.

so sad <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[saveferris2009]

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

I know a parent from our area, who was a nurse, had heard that we've done CPT since day one and went to the RT department and asked them to show her how to do it, since the local cf clinic viewed it as necessary only IF there are symptoms.</end quote></div>

which is exactly why life expectancies vary so much across the US and the world.

so sad <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[saveferris2009]

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

I know a parent from our area, who was a nurse, had heard that we've done CPT since day one and went to the RT department and asked them to show her how to do it, since the local cf clinic viewed it as necessary only IF there are symptoms.</end quote></div>

which is exactly why life expectancies vary so much across the US and the world.

so sad <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[saveferris2009]

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

I know a parent from our area, who was a nurse, had heard that we've done CPT since day one and went to the RT department and asked them to show her how to do it, since the local cf clinic viewed it as necessary only IF there are symptoms.</end quote>

which is exactly why life expectancies vary so much across the US and the world.

so sad <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
<br />
<br />I know a parent from our area, who was a nurse, had heard that we've done CPT since day one and went to the RT department and asked them to show her how to do it, since the local cf clinic viewed it as necessary only IF there are symptoms.</end quote>
<br />
<br />which is exactly why life expectancies vary so much across the US and the world.
<br />
<br />so sad <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[jbrandonAW]

I too agree that she should atleast be getting CPT! Prevention is key, and establishing a routine is very important too. (I think thats why it is harder for alot of us adult cfers to stic with it b/c most of us didn't get a routine until we were in our teens).

As for ursidol. I was on it for 3 years, finally I said hey lets try me getting off of it and see how it goes. My doc said that I need to come in back in 3 months for a liver function test and then every 6 months after that. (so far my liver function has been on the low side).

As for inhaled meds -I do think that unless there is an issue you could hold off on those until atleast a year.

I think if more moms like you advocated for more aggressive therapy clinics would catch on.

 

[jbrandonAW]

I too agree that she should atleast be getting CPT! Prevention is key, and establishing a routine is very important too. (I think thats why it is harder for alot of us adult cfers to stic with it b/c most of us didn't get a routine until we were in our teens).

As for ursidol. I was on it for 3 years, finally I said hey lets try me getting off of it and see how it goes. My doc said that I need to come in back in 3 months for a liver function test and then every 6 months after that. (so far my liver function has been on the low side).

As for inhaled meds -I do think that unless there is an issue you could hold off on those until atleast a year.

I think if more moms like you advocated for more aggressive therapy clinics would catch on.

 

[jbrandonAW]

I too agree that she should atleast be getting CPT! Prevention is key, and establishing a routine is very important too. (I think thats why it is harder for alot of us adult cfers to stic with it b/c most of us didn't get a routine until we were in our teens).

As for ursidol. I was on it for 3 years, finally I said hey lets try me getting off of it and see how it goes. My doc said that I need to come in back in 3 months for a liver function test and then every 6 months after that. (so far my liver function has been on the low side).

As for inhaled meds -I do think that unless there is an issue you could hold off on those until atleast a year.

I think if more moms like you advocated for more aggressive therapy clinics would catch on.

 

[jbrandonAW]

I too agree that she should atleast be getting CPT! Prevention is key, and establishing a routine is very important too. (I think thats why it is harder for alot of us adult cfers to stic with it b/c most of us didn't get a routine until we were in our teens).

As for ursidol. I was on it for 3 years, finally I said hey lets try me getting off of it and see how it goes. My doc said that I need to come in back in 3 months for a liver function test and then every 6 months after that. (so far my liver function has been on the low side).

As for inhaled meds -I do think that unless there is an issue you could hold off on those until atleast a year.

I think if more moms like you advocated for more aggressive therapy clinics would catch on.

 

[jbrandonAW]

I too agree that she should atleast be getting CPT! Prevention is key, and establishing a routine is very important too. (I think thats why it is harder for alot of us adult cfers to stic with it b/c most of us didn't get a routine until we were in our teens).
<br />
<br />As for ursidol. I was on it for 3 years, finally I said hey lets try me getting off of it and see how it goes. My doc said that I need to come in back in 3 months for a liver function test and then every 6 months after that. (so far my liver function has been on the low side).
<br />
<br />As for inhaled meds -I do think that unless there is an issue you could hold off on those until atleast a year.
<br />
<br />I think if more moms like you advocated for more aggressive therapy clinics would catch on.

 

[hmw]

Waiting *until* your child is symptomatic to start CPT makes absolutely no sense to me... the whole point of preventative care is to keep your child healthy and hopefully stave off symptoms for as long as possible. If you wait for them to get sick for the first time to start doing this, you are missing a valuable window of opportunity you will NOT get again.

The point also needs to be made that when your child is sick and feeling miserable is a bad time to try to introduce something new to their life, nevermind trying to get a young toddler to cooperate with CPT & neb sessions multiple times a day when they aren't used to it. I would much rather make CPT and nebs a part of routine when you can ease them into it and have it a way of life by the time they are either acutely ill with something or develop chronic symptoms.

 

[hmw]

Waiting *until* your child is symptomatic to start CPT makes absolutely no sense to me... the whole point of preventative care is to keep your child healthy and hopefully stave off symptoms for as long as possible. If you wait for them to get sick for the first time to start doing this, you are missing a valuable window of opportunity you will NOT get again.

The point also needs to be made that when your child is sick and feeling miserable is a bad time to try to introduce something new to their life, nevermind trying to get a young toddler to cooperate with CPT & neb sessions multiple times a day when they aren't used to it. I would much rather make CPT and nebs a part of routine when you can ease them into it and have it a way of life by the time they are either acutely ill with something or develop chronic symptoms.

 

[hmw]

Waiting *until* your child is symptomatic to start CPT makes absolutely no sense to me... the whole point of preventative care is to keep your child healthy and hopefully stave off symptoms for as long as possible. If you wait for them to get sick for the first time to start doing this, you are missing a valuable window of opportunity you will NOT get again.

The point also needs to be made that when your child is sick and feeling miserable is a bad time to try to introduce something new to their life, nevermind trying to get a young toddler to cooperate with CPT & neb sessions multiple times a day when they aren't used to it. I would much rather make CPT and nebs a part of routine when you can ease them into it and have it a way of life by the time they are either acutely ill with something or develop chronic symptoms.

 

[hmw]

Waiting *until* your child is symptomatic to start CPT makes absolutely no sense to me... the whole point of preventative care is to keep your child healthy and hopefully stave off symptoms for as long as possible. If you wait for them to get sick for the first time to start doing this, you are missing a valuable window of opportunity you will NOT get again.

The point also needs to be made that when your child is sick and feeling miserable is a bad time to try to introduce something new to their life, nevermind trying to get a young toddler to cooperate with CPT & neb sessions multiple times a day when they aren't used to it. I would much rather make CPT and nebs a part of routine when you can ease them into it and have it a way of life by the time they are either acutely ill with something or develop chronic symptoms.

 

[hmw]

Waiting *until* your child is symptomatic to start CPT makes absolutely no sense to me... the whole point of preventative care is to keep your child healthy and hopefully stave off symptoms for as long as possible. If you wait for them to get sick for the first time to start doing this, you are missing a valuable window of opportunity you will NOT get again.
<br />
<br />The point also needs to be made that when your child is sick and feeling miserable is a bad time to try to introduce something new to their life, nevermind trying to get a young toddler to cooperate with CPT & neb sessions multiple times a day when they aren't used to it. I would much rather make CPT and nebs a part of routine when you can ease them into it and have it a way of life by the time they are either acutely ill with something or develop chronic symptoms.

 

[JosephinesMommy]

Again, thanks to everyone for the replies. After speaking with my husband I am even more irritated. He too believes that because she isn't having any "symptoms" that I am over reacting. I will definately INSIST on them teaching me CPT this next visit or I will look into switching clinics... which would suck. My thoughs were the same as yours, Harriet, that when Bug is sick and possibly in the hospital does not sound like a fun time to start CPT. That and the fact that we are considering baby #2 next summer... Routines would be good before then.

 

[JosephinesMommy]

Again, thanks to everyone for the replies. After speaking with my husband I am even more irritated. He too believes that because she isn't having any "symptoms" that I am over reacting. I will definately INSIST on them teaching me CPT this next visit or I will look into switching clinics... which would suck. My thoughs were the same as yours, Harriet, that when Bug is sick and possibly in the hospital does not sound like a fun time to start CPT. That and the fact that we are considering baby #2 next summer... Routines would be good before then.

 

[JosephinesMommy]

Again, thanks to everyone for the replies. After speaking with my husband I am even more irritated. He too believes that because she isn't having any "symptoms" that I am over reacting. I will definately INSIST on them teaching me CPT this next visit or I will look into switching clinics... which would suck. My thoughs were the same as yours, Harriet, that when Bug is sick and possibly in the hospital does not sound like a fun time to start CPT. That and the fact that we are considering baby #2 next summer... Routines would be good before then.

 

[JosephinesMommy]

Again, thanks to everyone for the replies. After speaking with my husband I am even more irritated. He too believes that because she isn't having any "symptoms" that I am over reacting. I will definately INSIST on them teaching me CPT this next visit or I will look into switching clinics... which would suck. My thoughs were the same as yours, Harriet, that when Bug is sick and possibly in the hospital does not sound like a fun time to start CPT. That and the fact that we are considering baby #2 next summer... Routines would be good before then.

 

[JosephinesMommy]

Again, thanks to everyone for the replies. After speaking with my husband I am even more irritated. He too believes that because she isn't having any "symptoms" that I am over reacting. I will definately INSIST on them teaching me CPT this next visit or I will look into switching clinics... which would suck. My thoughs were the same as yours, Harriet, that when Bug is sick and possibly in the hospital does not sound like a fun time to start CPT. That and the fact that we are considering baby #2 next summer... Routines would be good before then.