Tune up

3

3gr8kids

New member
Yesterday I took Kaley to the Dr. Third time in two weeks. Not our clinic but reg Dr. He is new to our practice and FULL of info which I love. He told me that some clinics are now putting CFers in the hosp 1x a yr for a tune-up even if not sick just due to changes in the care of CFers now....

How do you guys feel about this?

Have you heard of this?

I am taking Kaley to Syracuse to our CF center tomorrow and I would love some advice from yall!!!
 
3

3gr8kids

New member
Yesterday I took Kaley to the Dr. Third time in two weeks. Not our clinic but reg Dr. He is new to our practice and FULL of info which I love. He told me that some clinics are now putting CFers in the hosp 1x a yr for a tune-up even if not sick just due to changes in the care of CFers now....

How do you guys feel about this?

Have you heard of this?

I am taking Kaley to Syracuse to our CF center tomorrow and I would love some advice from yall!!!
 
3

3gr8kids

New member
Yesterday I took Kaley to the Dr. Third time in two weeks. Not our clinic but reg Dr. He is new to our practice and FULL of info which I love. He told me that some clinics are now putting CFers in the hosp 1x a yr for a tune-up even if not sick just due to changes in the care of CFers now....

How do you guys feel about this?

Have you heard of this?

I am taking Kaley to Syracuse to our CF center tomorrow and I would love some advice from yall!!!
 
3

3gr8kids

New member
Yesterday I took Kaley to the Dr. Third time in two weeks. Not our clinic but reg Dr. He is new to our practice and FULL of info which I love. He told me that some clinics are now putting CFers in the hosp 1x a yr for a tune-up even if not sick just due to changes in the care of CFers now....

How do you guys feel about this?

Have you heard of this?

I am taking Kaley to Syracuse to our CF center tomorrow and I would love some advice from yall!!!
 
3

3gr8kids

New member
Yesterday I took Kaley to the Dr. Third time in two weeks. Not our clinic but reg Dr. He is new to our practice and FULL of info which I love. He told me that some clinics are now putting CFers in the hosp 1x a yr for a tune-up even if not sick just due to changes in the care of CFers now....
<br />
<br />How do you guys feel about this?
<br />
<br />Have you heard of this?
<br />
<br />I am taking Kaley to Syracuse to our CF center tomorrow and I would love some advice from yall!!!
 
J

JORDYSMOM

New member
There are clinics that do this even more frequently too. I've heard of some who go in every 3 months. I'm not a big fan of this for my son though, because there are so many germs in the hospital, which I feel might be more of a risk to him. He does not culture any bugs.

Each patient is different though, so there are likely some who benefit from this regimen, especially those who do culture some of the more difficult bacteria.

Stacey
 
J

JORDYSMOM

New member
There are clinics that do this even more frequently too. I've heard of some who go in every 3 months. I'm not a big fan of this for my son though, because there are so many germs in the hospital, which I feel might be more of a risk to him. He does not culture any bugs.

Each patient is different though, so there are likely some who benefit from this regimen, especially those who do culture some of the more difficult bacteria.

Stacey
 
J

JORDYSMOM

New member
There are clinics that do this even more frequently too. I've heard of some who go in every 3 months. I'm not a big fan of this for my son though, because there are so many germs in the hospital, which I feel might be more of a risk to him. He does not culture any bugs.

Each patient is different though, so there are likely some who benefit from this regimen, especially those who do culture some of the more difficult bacteria.

Stacey
 
J

JORDYSMOM

New member
There are clinics that do this even more frequently too. I've heard of some who go in every 3 months. I'm not a big fan of this for my son though, because there are so many germs in the hospital, which I feel might be more of a risk to him. He does not culture any bugs.

Each patient is different though, so there are likely some who benefit from this regimen, especially those who do culture some of the more difficult bacteria.

Stacey
 
J

JORDYSMOM

New member
There are clinics that do this even more frequently too. I've heard of some who go in every 3 months. I'm not a big fan of this for my son though, because there are so many germs in the hospital, which I feel might be more of a risk to him. He does not culture any bugs.
<br />
<br />Each patient is different though, so there are likely some who benefit from this regimen, especially those who do culture some of the more difficult bacteria.
<br />
<br />Stacey
<br />
<br />
 
M

Mommafirst

Guest
Yes, I've heard of this. And as Stacey said, some do it even more frequently.

My feeling is that it really depends on your kiddo. If you start to see a pattern, say every October they start to get sick and stay on and off sick all winter until you finally give in on the orals and go to IVs or they wind up in patient or every 4-5 months, then maybe a preemptive "clean out" isn't a bad idea.

My friend's CF son is not quite 3 and he has had such a tough year that this winter they are doing 4 weeks on IVs and 8 weeks off and rotating like that until April.

I think a tune up for a kid who has never needed IVs before, just "because" is a horrible idea, because those are powerful drugs, they are an arsenal you don't want to encourage a potential resistance to, and there are side effects to the IVs that aren't great.

Let me know what the center says, though, I'm always curious to hear the thoughts from the different CF docs.
 
M

Mommafirst

Guest
Yes, I've heard of this. And as Stacey said, some do it even more frequently.

My feeling is that it really depends on your kiddo. If you start to see a pattern, say every October they start to get sick and stay on and off sick all winter until you finally give in on the orals and go to IVs or they wind up in patient or every 4-5 months, then maybe a preemptive "clean out" isn't a bad idea.

My friend's CF son is not quite 3 and he has had such a tough year that this winter they are doing 4 weeks on IVs and 8 weeks off and rotating like that until April.

I think a tune up for a kid who has never needed IVs before, just "because" is a horrible idea, because those are powerful drugs, they are an arsenal you don't want to encourage a potential resistance to, and there are side effects to the IVs that aren't great.

Let me know what the center says, though, I'm always curious to hear the thoughts from the different CF docs.
 
M

Mommafirst

Guest
Yes, I've heard of this. And as Stacey said, some do it even more frequently.

My feeling is that it really depends on your kiddo. If you start to see a pattern, say every October they start to get sick and stay on and off sick all winter until you finally give in on the orals and go to IVs or they wind up in patient or every 4-5 months, then maybe a preemptive "clean out" isn't a bad idea.

My friend's CF son is not quite 3 and he has had such a tough year that this winter they are doing 4 weeks on IVs and 8 weeks off and rotating like that until April.

I think a tune up for a kid who has never needed IVs before, just "because" is a horrible idea, because those are powerful drugs, they are an arsenal you don't want to encourage a potential resistance to, and there are side effects to the IVs that aren't great.

Let me know what the center says, though, I'm always curious to hear the thoughts from the different CF docs.
 
M

Mommafirst

Guest
Yes, I've heard of this. And as Stacey said, some do it even more frequently.

My feeling is that it really depends on your kiddo. If you start to see a pattern, say every October they start to get sick and stay on and off sick all winter until you finally give in on the orals and go to IVs or they wind up in patient or every 4-5 months, then maybe a preemptive "clean out" isn't a bad idea.

My friend's CF son is not quite 3 and he has had such a tough year that this winter they are doing 4 weeks on IVs and 8 weeks off and rotating like that until April.

I think a tune up for a kid who has never needed IVs before, just "because" is a horrible idea, because those are powerful drugs, they are an arsenal you don't want to encourage a potential resistance to, and there are side effects to the IVs that aren't great.

Let me know what the center says, though, I'm always curious to hear the thoughts from the different CF docs.
 
M

Mommafirst

Guest
Yes, I've heard of this. And as Stacey said, some do it even more frequently.
<br />
<br />My feeling is that it really depends on your kiddo. If you start to see a pattern, say every October they start to get sick and stay on and off sick all winter until you finally give in on the orals and go to IVs or they wind up in patient or every 4-5 months, then maybe a preemptive "clean out" isn't a bad idea.
<br />
<br />My friend's CF son is not quite 3 and he has had such a tough year that this winter they are doing 4 weeks on IVs and 8 weeks off and rotating like that until April.
<br />
<br />I think a tune up for a kid who has never needed IVs before, just "because" is a horrible idea, because those are powerful drugs, they are an arsenal you don't want to encourage a potential resistance to, and there are side effects to the IVs that aren't great.
<br />
<br />Let me know what the center says, though, I'm always curious to hear the thoughts from the different CF docs.
 
3

3gr8kids

New member
neither one of my cfers have ever cultured anything...it just seems like they are always sick...and I dont know if its CF or well CF...hmmmm....My kids both have very high pulm func numbers....but they have a ton of mucus...it is just so hard to tell what they need....and i hate the fact that our center isnt here...so the reg dr says one thing and the cf center says another..hmmmm
 
3

3gr8kids

New member
neither one of my cfers have ever cultured anything...it just seems like they are always sick...and I dont know if its CF or well CF...hmmmm....My kids both have very high pulm func numbers....but they have a ton of mucus...it is just so hard to tell what they need....and i hate the fact that our center isnt here...so the reg dr says one thing and the cf center says another..hmmmm
 
3

3gr8kids

New member
neither one of my cfers have ever cultured anything...it just seems like they are always sick...and I dont know if its CF or well CF...hmmmm....My kids both have very high pulm func numbers....but they have a ton of mucus...it is just so hard to tell what they need....and i hate the fact that our center isnt here...so the reg dr says one thing and the cf center says another..hmmmm
 
3

3gr8kids

New member
neither one of my cfers have ever cultured anything...it just seems like they are always sick...and I dont know if its CF or well CF...hmmmm....My kids both have very high pulm func numbers....but they have a ton of mucus...it is just so hard to tell what they need....and i hate the fact that our center isnt here...so the reg dr says one thing and the cf center says another..hmmmm
 
3

3gr8kids

New member
neither one of my cfers have ever cultured anything...it just seems like they are always sick...and I dont know if its CF or well CF...hmmmm....My kids both have very high pulm func numbers....but they have a ton of mucus...it is just so hard to tell what they need....and i hate the fact that our center isnt here...so the reg dr says one thing and the cf center says another..hmmmm
 
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