Does your center give you this information?

hmw

New member
Emily's center (Central CT CF Center) sends out a quarterly newsletter and in this issue the directors of the pediatric and adult programs included summaries of information they learned at the annual national CF conference... among that, a summary of how our center measures up against the national average for pulmonary health and nutritional status. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It makes me really happy we are able to take Emily to this center (and also makes me glad that there are plenty of yrs for improvement to be made before she needs the adult center.)

Anyway, here is how we measure up...

FEV1 6-17yrs old: CCCFC: 97% / Nat. average: 90%

BMI 2-20yrs old: CCCFC: 59% / Nat. average: 48% *they stress heavily how important it is that they've been able to help kids maintain such good nutritional status and how it can help with supporting respiratory health!*

Recommended followup yearly (4/yr, 2 pft's, 1 culture) CCCFC: 83% / Nat. avg: 68%

However, our adult program is well below average, which is disappointing... I hope it's much improved by the time Emily needs it in 10 yrs and it disappoints me for the 120+ patients who need it at this time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Anyway, was just wondering if those of you from other areas got info like this... and how happy you were with care you got for your kids from your clinics.

They also included info regarding how many kids were on Pulmozyne (73% for kids age 6 and older), 83% of kids positive for pseudomonas on Zithromax (48% of them on TOBI cycles), 23% on ibuprofen, 5% of kids age 6+ on hypertonic saline. Those stats mean little to me as Emily has not needed any of those meds yet but I assume it gives a good pic of their 'philosophy' there.
 

hmw

New member
Emily's center (Central CT CF Center) sends out a quarterly newsletter and in this issue the directors of the pediatric and adult programs included summaries of information they learned at the annual national CF conference... among that, a summary of how our center measures up against the national average for pulmonary health and nutritional status. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It makes me really happy we are able to take Emily to this center (and also makes me glad that there are plenty of yrs for improvement to be made before she needs the adult center.)

Anyway, here is how we measure up...

FEV1 6-17yrs old: CCCFC: 97% / Nat. average: 90%

BMI 2-20yrs old: CCCFC: 59% / Nat. average: 48% *they stress heavily how important it is that they've been able to help kids maintain such good nutritional status and how it can help with supporting respiratory health!*

Recommended followup yearly (4/yr, 2 pft's, 1 culture) CCCFC: 83% / Nat. avg: 68%

However, our adult program is well below average, which is disappointing... I hope it's much improved by the time Emily needs it in 10 yrs and it disappoints me for the 120+ patients who need it at this time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Anyway, was just wondering if those of you from other areas got info like this... and how happy you were with care you got for your kids from your clinics.

They also included info regarding how many kids were on Pulmozyne (73% for kids age 6 and older), 83% of kids positive for pseudomonas on Zithromax (48% of them on TOBI cycles), 23% on ibuprofen, 5% of kids age 6+ on hypertonic saline. Those stats mean little to me as Emily has not needed any of those meds yet but I assume it gives a good pic of their 'philosophy' there.
 

hmw

New member
Emily's center (Central CT CF Center) sends out a quarterly newsletter and in this issue the directors of the pediatric and adult programs included summaries of information they learned at the annual national CF conference... among that, a summary of how our center measures up against the national average for pulmonary health and nutritional status. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It makes me really happy we are able to take Emily to this center (and also makes me glad that there are plenty of yrs for improvement to be made before she needs the adult center.)

Anyway, here is how we measure up...

FEV1 6-17yrs old: CCCFC: 97% / Nat. average: 90%

BMI 2-20yrs old: CCCFC: 59% / Nat. average: 48% *they stress heavily how important it is that they've been able to help kids maintain such good nutritional status and how it can help with supporting respiratory health!*

Recommended followup yearly (4/yr, 2 pft's, 1 culture) CCCFC: 83% / Nat. avg: 68%

However, our adult program is well below average, which is disappointing... I hope it's much improved by the time Emily needs it in 10 yrs and it disappoints me for the 120+ patients who need it at this time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Anyway, was just wondering if those of you from other areas got info like this... and how happy you were with care you got for your kids from your clinics.

They also included info regarding how many kids were on Pulmozyne (73% for kids age 6 and older), 83% of kids positive for pseudomonas on Zithromax (48% of them on TOBI cycles), 23% on ibuprofen, 5% of kids age 6+ on hypertonic saline. Those stats mean little to me as Emily has not needed any of those meds yet but I assume it gives a good pic of their 'philosophy' there.
 

hmw

New member
Emily's center (Central CT CF Center) sends out a quarterly newsletter and in this issue the directors of the pediatric and adult programs included summaries of information they learned at the annual national CF conference... among that, a summary of how our center measures up against the national average for pulmonary health and nutritional status. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It makes me really happy we are able to take Emily to this center (and also makes me glad that there are plenty of yrs for improvement to be made before she needs the adult center.)

Anyway, here is how we measure up...

FEV1 6-17yrs old: CCCFC: 97% / Nat. average: 90%

BMI 2-20yrs old: CCCFC: 59% / Nat. average: 48% *they stress heavily how important it is that they've been able to help kids maintain such good nutritional status and how it can help with supporting respiratory health!*

Recommended followup yearly (4/yr, 2 pft's, 1 culture) CCCFC: 83% / Nat. avg: 68%

However, our adult program is well below average, which is disappointing... I hope it's much improved by the time Emily needs it in 10 yrs and it disappoints me for the 120+ patients who need it at this time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Anyway, was just wondering if those of you from other areas got info like this... and how happy you were with care you got for your kids from your clinics.

They also included info regarding how many kids were on Pulmozyne (73% for kids age 6 and older), 83% of kids positive for pseudomonas on Zithromax (48% of them on TOBI cycles), 23% on ibuprofen, 5% of kids age 6+ on hypertonic saline. Those stats mean little to me as Emily has not needed any of those meds yet but I assume it gives a good pic of their 'philosophy' there.
 

hmw

New member
Emily's center (Central CT CF Center) sends out a quarterly newsletter and in this issue the directors of the pediatric and adult programs included summaries of information they learned at the annual national CF conference... among that, a summary of how our center measures up against the national average for pulmonary health and nutritional status. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It makes me really happy we are able to take Emily to this center (and also makes me glad that there are plenty of yrs for improvement to be made before she needs the adult center.)
<br />
<br />Anyway, here is how we measure up...
<br />
<br />FEV1 6-17yrs old: CCCFC: 97% / Nat. average: 90%
<br />
<br />BMI 2-20yrs old: CCCFC: 59% / Nat. average: 48% *they stress heavily how important it is that they've been able to help kids maintain such good nutritional status and how it can help with supporting respiratory health!*
<br />
<br />Recommended followup yearly (4/yr, 2 pft's, 1 culture) CCCFC: 83% / Nat. avg: 68%
<br />
<br />However, our adult program is well below average, which is disappointing... I hope it's much improved by the time Emily needs it in 10 yrs and it disappoints me for the 120+ patients who need it at this time. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Anyway, was just wondering if those of you from other areas got info like this... and how happy you were with care you got for your kids from your clinics.
<br />
<br />They also included info regarding how many kids were on Pulmozyne (73% for kids age 6 and older), 83% of kids positive for pseudomonas on Zithromax (48% of them on TOBI cycles), 23% on ibuprofen, 5% of kids age 6+ on hypertonic saline. Those stats mean little to me as Emily has not needed any of those meds yet but I assume it gives a good pic of their 'philosophy' there.
 

amber682

New member
I just got that in the mail too <img src="i/expressions/face-icon-small-smile.gif" border="0">

It is very reassuring. They're very rproud of how many of their patients have a BMI of atleast 50%.

Can I ask you a question? Does your daughter go on CF1 days or CF2 days? My son has cultured stenotrophomonas for over a year, and staph as far back as I can rememeber. Last visit they said he will now be going on CF2 days because of what he cultures. It has made scheduling appts. a little tricky.
 

amber682

New member
I just got that in the mail too <img src="i/expressions/face-icon-small-smile.gif" border="0">

It is very reassuring. They're very rproud of how many of their patients have a BMI of atleast 50%.

Can I ask you a question? Does your daughter go on CF1 days or CF2 days? My son has cultured stenotrophomonas for over a year, and staph as far back as I can rememeber. Last visit they said he will now be going on CF2 days because of what he cultures. It has made scheduling appts. a little tricky.
 

amber682

New member
I just got that in the mail too <img src="i/expressions/face-icon-small-smile.gif" border="0">

It is very reassuring. They're very rproud of how many of their patients have a BMI of atleast 50%.

Can I ask you a question? Does your daughter go on CF1 days or CF2 days? My son has cultured stenotrophomonas for over a year, and staph as far back as I can rememeber. Last visit they said he will now be going on CF2 days because of what he cultures. It has made scheduling appts. a little tricky.
 

amber682

New member
I just got that in the mail too <img src="i/expressions/face-icon-small-smile.gif" border="0">

It is very reassuring. They're very rproud of how many of their patients have a BMI of atleast 50%.

Can I ask you a question? Does your daughter go on CF1 days or CF2 days? My son has cultured stenotrophomonas for over a year, and staph as far back as I can rememeber. Last visit they said he will now be going on CF2 days because of what he cultures. It has made scheduling appts. a little tricky.
 

amber682

New member
I just got that in the mail too <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />It is very reassuring. They're very rproud of how many of their patients have a BMI of atleast 50%.
<br />
<br />Can I ask you a question? Does your daughter go on CF1 days or CF2 days? My son has cultured stenotrophomonas for over a year, and staph as far back as I can rememeber. Last visit they said he will now be going on CF2 days because of what he cultures. It has made scheduling appts. a little tricky.
 
M

Mommafirst

Guest
Some of that information is available on the CFF website. Our center does a presentation to show this information at our yearly education day. Unfortunately, a very small percentage of the patients/families show for this day.
 
M

Mommafirst

Guest
Some of that information is available on the CFF website. Our center does a presentation to show this information at our yearly education day. Unfortunately, a very small percentage of the patients/families show for this day.
 
M

Mommafirst

Guest
Some of that information is available on the CFF website. Our center does a presentation to show this information at our yearly education day. Unfortunately, a very small percentage of the patients/families show for this day.
 
M

Mommafirst

Guest
Some of that information is available on the CFF website. Our center does a presentation to show this information at our yearly education day. Unfortunately, a very small percentage of the patients/families show for this day.
 
M

Mommafirst

Guest
Some of that information is available on the CFF website. Our center does a presentation to show this information at our yearly education day. Unfortunately, a very small percentage of the patients/families show for this day.
 
M

mneville

Guest
Heather- Our center has the same problem. They offer a great education day with lots of things but hardly any families show up. It's always the same 10-12 families. I don't get it! I go to everything possible when it comes to learning about CF.

Megan
 
M

mneville

Guest
Heather- Our center has the same problem. They offer a great education day with lots of things but hardly any families show up. It's always the same 10-12 families. I don't get it! I go to everything possible when it comes to learning about CF.

Megan
 
M

mneville

Guest
Heather- Our center has the same problem. They offer a great education day with lots of things but hardly any families show up. It's always the same 10-12 families. I don't get it! I go to everything possible when it comes to learning about CF.

Megan
 
M

mneville

Guest
Heather- Our center has the same problem. They offer a great education day with lots of things but hardly any families show up. It's always the same 10-12 families. I don't get it! I go to everything possible when it comes to learning about CF.

Megan
 
M

mneville

Guest
Heather- Our center has the same problem. They offer a great education day with lots of things but hardly any families show up. It's always the same 10-12 families. I don't get it! I go to everything possible when it comes to learning about CF.
<br />
<br /> Megan
 
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