Best CF Centers

[TleighsHusband]

It would also be interesting to see how much location has anything to do with the health of CFers and not just what clinic they go. Obviously some clinics will be better than others, but I wonder what the climate/air conditions of where they are located also have a major factor in the health of the patients. We lived in four very different climates which I believe had major impacts on Tiffany's health and breathing -- I know this is off topic a little bit but my main point is that there is also more to the discussion than just the clinic practices. We were thankful for or docs who were aggressive with treatment although I wish they would have pushed exercise more.

 

[TleighsHusband]

It would also be interesting to see how much location has anything to do with the health of CFers and not just what clinic they go. Obviously some clinics will be better than others, but I wonder what the climate/air conditions of where they are located also have a major factor in the health of the patients. We lived in four very different climates which I believe had major impacts on Tiffany's health and breathing -- I know this is off topic a little bit but my main point is that there is also more to the discussion than just the clinic practices. We were thankful for or docs who were aggressive with treatment although I wish they would have pushed exercise more.

 

[TleighsHusband]

It would also be interesting to see how much location has anything to do with the health of CFers and not just what clinic they go. Obviously some clinics will be better than others, but I wonder what the climate/air conditions of where they are located also have a major factor in the health of the patients. We lived in four very different climates which I believe had major impacts on Tiffany's health and breathing -- I know this is off topic a little bit but my main point is that there is also more to the discussion than just the clinic practices. We were thankful for or docs who were aggressive with treatment although I wish they would have pushed exercise more.

 

[TleighsHusband]

It would also be interesting to see how much location has anything to do with the health of CFers and not just what clinic they go. Obviously some clinics will be better than others, but I wonder what the climate/air conditions of where they are located also have a major factor in the health of the patients. We lived in four very different climates which I believe had major impacts on Tiffany's health and breathing -- I know this is off topic a little bit but my main point is that there is also more to the discussion than just the clinic practices. We were thankful for or docs who were aggressive with treatment although I wish they would have pushed exercise more.

 

[TleighsHusband]

It would also be interesting to see how much location has anything to do with the health of CFers and not just what clinic they go. Obviously some clinics will be better than others, but I wonder what the climate/air conditions of where they are located also have a major factor in the health of the patients. We lived in four very different climates which I believe had major impacts on Tiffany's health and breathing -- I know this is off topic a little bit but my main point is that there is also more to the discussion than just the clinic practices. We were thankful for or docs who were aggressive with treatment although I wish they would have pushed exercise more.

 

[LisaGreene]

Lots of great thoughts here. I agree thereare things that affect the stats that might not be seen. For example, our center, Seattle Children's Hosp has great docs. Dr. Bonnie Ramsey invented Tobi. They are aggressive and want to slow progression in every way possible. Their FEV is at the top, over 100% but their clinic visit numbersaren't the very best then this affects the overall rankings. Hearing themdiscuss it, it's becausethey are regional and people come from about 4 states including Alaska so their stats for quarterly visits get goofed up cause folks from AK just don't come each quarter. <br><br>Anyways, I think stats are certainly valuable info but decisions need to be made on more than just stats. The relationships with the docs, how they treat you and your child, are they using the best of what there is in the medical world at the time, are they transparent, do they explain things when you ask questions, are they open to new ideas,etc. And support staff is critical, too. You could have the best docs ever but if the CF nurse doesn't return calls, call in presc. quickly, etc. then that will affect you and your child's quality of life. Lastly,I did hear that there was some research presented at NACFC 2010 about colder climates being better for CF but I can't find it anywhere. If someone has heard of this, please share. ;-) <br>

 

[LisaGreene]

Lots of great thoughts here. I agree thereare things that affect the stats that might not be seen. For example, our center, Seattle Children's Hosp has great docs. Dr. Bonnie Ramsey invented Tobi. They are aggressive and want to slow progression in every way possible. Their FEV is at the top, over 100% but their clinic visit numbersaren't the very best then this affects the overall rankings. Hearing themdiscuss it, it's becausethey are regional and people come from about 4 states including Alaska so their stats for quarterly visits get goofed up cause folks from AK just don't come each quarter. <br><br>Anyways, I think stats are certainly valuable info but decisions need to be made on more than just stats. The relationships with the docs, how they treat you and your child, are they using the best of what there is in the medical world at the time, are they transparent, do they explain things when you ask questions, are they open to new ideas,etc. And support staff is critical, too. You could have the best docs ever but if the CF nurse doesn't return calls, call in presc. quickly, etc. then that will affect you and your child's quality of life. Lastly,I did hear that there was some research presented at NACFC 2010 about colder climates being better for CF but I can't find it anywhere. If someone has heard of this, please share. ;-) <br>

 

[LisaGreene]

Lots of great thoughts here. I agree thereare things that affect the stats that might not be seen. For example, our center, Seattle Children's Hosp has great docs. Dr. Bonnie Ramsey invented Tobi. They are aggressive and want to slow progression in every way possible. Their FEV is at the top, over 100% but their clinic visit numbersaren't the very best then this affects the overall rankings. Hearing themdiscuss it, it's becausethey are regional and people come from about 4 states including Alaska so their stats for quarterly visits get goofed up cause folks from AK just don't come each quarter. <br><br>Anyways, I think stats are certainly valuable info but decisions need to be made on more than just stats. The relationships with the docs, how they treat you and your child, are they using the best of what there is in the medical world at the time, are they transparent, do they explain things when you ask questions, are they open to new ideas,etc. And support staff is critical, too. You could have the best docs ever but if the CF nurse doesn't return calls, call in presc. quickly, etc. then that will affect you and your child's quality of life. Lastly,I did hear that there was some research presented at NACFC 2010 about colder climates being better for CF but I can't find it anywhere. If someone has heard of this, please share. ;-) <br>

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaGreene</b></i> Lots of great thoughts here. I agree thereare things that affect the stats that might not be seen.
<P></P>Lastly,I did hear that there was some research presented at NACFC 2010 about colder climates being better for CF but I can't find it anywhere. If someone has heard of this, please share. ;-)
<P></end quote> </P>
<P></P>
<P>We live in a cold climate and DS plays outside in the winter at recess -- he loves the snow. Since he was a baby, his daycare made sure all the kids were outside playing. Someone from Minneapolis was just telling me that their doctors consider playing hockey an equivilant to a treatment (vest/cpt) because of the workout they get.</P>

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaGreene</b></i> Lots of great thoughts here. I agree thereare things that affect the stats that might not be seen.
<P></P>Lastly,I did hear that there was some research presented at NACFC 2010 about colder climates being better for CF but I can't find it anywhere. If someone has heard of this, please share. ;-)
<P></end quote> </P>
<P></P>
<P>We live in a cold climate and DS plays outside in the winter at recess -- he loves the snow. Since he was a baby, his daycare made sure all the kids were outside playing. Someone from Minneapolis was just telling me that their doctors consider playing hockey an equivilant to a treatment (vest/cpt) because of the workout they get.</P>

 

[Ratatosk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaGreene</b></i> Lots of great thoughts here. I agree thereare things that affect the stats that might not be seen.
<P></P>Lastly,I did hear that there was some research presented at NACFC 2010 about colder climates being better for CF but I can't find it anywhere. If someone has heard of this, please share. ;-)
<P></end quote> </P>
<P></P>
<P>We live in a cold climate and DS plays outside in the winter at recess -- he loves the snow. Since he was a baby, his daycare made sure all the kids were outside playing. Someone from Minneapolis was just telling me that their doctors consider playing hockey an equivilant to a treatment (vest/cpt) because of the workout they get.</P>

 

[Ratatosk]

DS loves playing outside, loves the snow and even as a baby, his daycare had him outside during the winter. Someone from Minneapolis recently told me that the U of MN actually considers playing hocket equivilent to a vest/cpt treatment due to the workout/breathing involved.

 

[Ratatosk]

DS loves playing outside, loves the snow and even as a baby, his daycare had him outside during the winter. Someone from Minneapolis recently told me that the U of MN actually considers playing hocket equivilent to a vest/cpt treatment due to the workout/breathing involved.

 

[Ratatosk]

DS loves playing outside, loves the snow and even as a baby, his daycare had him outside during the winter. Someone from Minneapolis recently told me that the U of MN actually considers playing hocket equivilent to a vest/cpt treatment due to the workout/breathing involved.

 

[kristanbz]

Hi yes, if anyone has information about the best climates to live in with CF; I would really appreciate it. I have been trying to do research on my own on this subject but haven't found any conclusive. I have been thinking moving to a beach area in Southern California may be best as my son could regularly go into the ocean.

As for the question about the best CF center, I take my son to both Children's Hospital in Washington, DC and the University of Minnesota CF Clinics. We live in the DC area, and they are a good team. However, I also take my son to UMN because they have one of the highest stats in the CFF Patient Registry. They have been more aggressive in treatments, which is what I prefer. However, we have a better relationship with the DC team since they are local, and they are always very good about answering questions and getting back to me. It has been very interesting to see the slight differences between the two clinics and the procedures/medicine they prescribe. I think in the end, having 2 CF teams on my son's case is a good thing.

 

[kristanbz]

Hi yes, if anyone has information about the best climates to live in with CF; I would really appreciate it. I have been trying to do research on my own on this subject but haven't found any conclusive. I have been thinking moving to a beach area in Southern California may be best as my son could regularly go into the ocean.

As for the question about the best CF center, I take my son to both Children's Hospital in Washington, DC and the University of Minnesota CF Clinics. We live in the DC area, and they are a good team. However, I also take my son to UMN because they have one of the highest stats in the CFF Patient Registry. They have been more aggressive in treatments, which is what I prefer. However, we have a better relationship with the DC team since they are local, and they are always very good about answering questions and getting back to me. It has been very interesting to see the slight differences between the two clinics and the procedures/medicine they prescribe. I think in the end, having 2 CF teams on my son's case is a good thing.

 

[kristanbz]

Hi yes, if anyone has information about the best climates to live in with CF; I would really appreciate it. I have been trying to do research on my own on this subject but haven't found any conclusive. I have been thinking moving to a beach area in Southern California may be best as my son could regularly go into the ocean.

As for the question about the best CF center, I take my son to both Children's Hospital in Washington, DC and the University of Minnesota CF Clinics. We live in the DC area, and they are a good team. However, I also take my son to UMN because they have one of the highest stats in the CFF Patient Registry. They have been more aggressive in treatments, which is what I prefer. However, we have a better relationship with the DC team since they are local, and they are always very good about answering questions and getting back to me. It has been very interesting to see the slight differences between the two clinics and the procedures/medicine they prescribe. I think in the end, having 2 CF teams on my son's case is a good thing.

 

[TreasureGoddess]

We're in the KC area. We go to Children's Mercy and have had good treatment, but not what I'd call aggressive. It's more reactive and higher attention is paid to those patients with bad levels of pft's. My son always has amazing pft's but often still gets hit with massive coughs & low energy & when his mrsa (colonized in lungs) flares up, it's a battle to get treatment. I always feel that we have to let him get sicker before they'll jump on board.

Can anyone give info (besides above) on whether they are happy with Omaha, NE, or St. Louis, or other midwest centers? We're looking at having a 2nd opinion on his treatment and deciding if we continue with KC or not.

Also it sounds like there's a new cf dr at KU Med center. We're scheduling an appointment there and will share our info when we have that.
Thanks!

 

[TreasureGoddess]

We're in the KC area. We go to Children's Mercy and have had good treatment, but not what I'd call aggressive. It's more reactive and higher attention is paid to those patients with bad levels of pft's. My son always has amazing pft's but often still gets hit with massive coughs & low energy & when his mrsa (colonized in lungs) flares up, it's a battle to get treatment. I always feel that we have to let him get sicker before they'll jump on board.

Can anyone give info (besides above) on whether they are happy with Omaha, NE, or St. Louis, or other midwest centers? We're looking at having a 2nd opinion on his treatment and deciding if we continue with KC or not.

Also it sounds like there's a new cf dr at KU Med center. We're scheduling an appointment there and will share our info when we have that.
Thanks!

 

[TreasureGoddess]

We're in the KC area. We go to Children's Mercy and have had good treatment, but not what I'd call aggressive. It's more reactive and higher attention is paid to those patients with bad levels of pft's. My son always has amazing pft's but often still gets hit with massive coughs & low energy & when his mrsa (colonized in lungs) flares up, it's a battle to get treatment. I always feel that we have to let him get sicker before they'll jump on board.

Can anyone give info (besides above) on whether they are happy with Omaha, NE, or St. Louis, or other midwest centers? We're looking at having a 2nd opinion on his treatment and deciding if we continue with KC or not.

Also it sounds like there's a new cf dr at KU Med center. We're scheduling an appointment there and will share our info when we have that.
Thanks!