Good cf Centers???

C

cheerfull

New member
Hi everyone mom of One w/cf, 3/nocf and one no longer w/us

I just moved from Mi. were at the U of M AnnArbor Hosp.
they ranked 3rd in the Nation for cf center care, they were so personal with you in treating you they got to know you and your child very well, and toke meny percations in keeping your child healthy!
I moved here to Georgia to start over and get away from painfull memories and Family, and had a baby since moving now with cf, and the care is different here, They say No need for breathing treatments unless they sound bad! What about perventive measure, so they don't get to the point were they sound bad!
I guess it's also just me worring to much because I got used to the people there and now I am starting over! I cant even tell you the all the doc's names and I've been takeing my babygirl there 4 almost a yr. Not to mention the staff teams names! Help I am scared I'm not in the best place to benifit my daughter!
 
C

cheerfull

New member
Hi everyone mom of One w/cf, 3/nocf and one no longer w/us

I just moved from Mi. were at the U of M AnnArbor Hosp.
they ranked 3rd in the Nation for cf center care, they were so personal with you in treating you they got to know you and your child very well, and toke meny percations in keeping your child healthy!
I moved here to Georgia to start over and get away from painfull memories and Family, and had a baby since moving now with cf, and the care is different here, They say No need for breathing treatments unless they sound bad! What about perventive measure, so they don't get to the point were they sound bad!
I guess it's also just me worring to much because I got used to the people there and now I am starting over! I cant even tell you the all the doc's names and I've been takeing my babygirl there 4 almost a yr. Not to mention the staff teams names! Help I am scared I'm not in the best place to benifit my daughter!
 
C

cheerfull

New member
Hi everyone mom of One w/cf, 3/nocf and one no longer w/us

I just moved from Mi. were at the U of M AnnArbor Hosp.
they ranked 3rd in the Nation for cf center care, they were so personal with you in treating you they got to know you and your child very well, and toke meny percations in keeping your child healthy!
I moved here to Georgia to start over and get away from painfull memories and Family, and had a baby since moving now with cf, and the care is different here, They say No need for breathing treatments unless they sound bad! What about perventive measure, so they don't get to the point were they sound bad!
I guess it's also just me worring to much because I got used to the people there and now I am starting over! I cant even tell you the all the doc's names and I've been takeing my babygirl there 4 almost a yr. Not to mention the staff teams names! Help I am scared I'm not in the best place to benifit my daughter!
 
S

Scarlett81

New member
Get the h*ll out of there. Cf is ALL preventative, cheerful. That is the key to long life-the only key. That is the basis of cf care. The only way you can live successfully with this disease is aggressive daily care.
I don't know you, or your little one. But I've been to bad centers. This doesn't sound like a good one. And what will they say when your baby needs their first course of IVs and hospitalization? How will they handle that? If they can't handle the easy times, when the baby is healthy-how will you feel under the pressure of a stressful, emotional situation? You need supportive people around you. Not to mention good care.
If I were you honestly, I'd find another center pronto. Don't feel bad about hurting anyone's feelingsm this is your childs life. To do that if you want, go to cff. org and click on the list of centers in your state.
Wish you the best.
 
S

Scarlett81

New member
Get the h*ll out of there. Cf is ALL preventative, cheerful. That is the key to long life-the only key. That is the basis of cf care. The only way you can live successfully with this disease is aggressive daily care.
I don't know you, or your little one. But I've been to bad centers. This doesn't sound like a good one. And what will they say when your baby needs their first course of IVs and hospitalization? How will they handle that? If they can't handle the easy times, when the baby is healthy-how will you feel under the pressure of a stressful, emotional situation? You need supportive people around you. Not to mention good care.
If I were you honestly, I'd find another center pronto. Don't feel bad about hurting anyone's feelingsm this is your childs life. To do that if you want, go to cff. org and click on the list of centers in your state.
Wish you the best.
 
S

Scarlett81

New member
Get the h*ll out of there. Cf is ALL preventative, cheerful. That is the key to long life-the only key. That is the basis of cf care. The only way you can live successfully with this disease is aggressive daily care.
I don't know you, or your little one. But I've been to bad centers. This doesn't sound like a good one. And what will they say when your baby needs their first course of IVs and hospitalization? How will they handle that? If they can't handle the easy times, when the baby is healthy-how will you feel under the pressure of a stressful, emotional situation? You need supportive people around you. Not to mention good care.
If I were you honestly, I'd find another center pronto. Don't feel bad about hurting anyone's feelingsm this is your childs life. To do that if you want, go to cff. org and click on the list of centers in your state.
Wish you the best.
 
R

Ratatosk

Administrator
Staff member
We've had the same issues with our local CF center. DS was diagnosed at a cf facility about 250 miles from home and they were so proactive, kept us in the loop -- encouraged us to take an active role in our son's care. Rude awakening when we started going to the local CF center when he was about 3 months old.

They couldn't believe we did CPT and nebs. Discouraged the nebs in fact. As they did with the Tobi our doctor in the City put him on ??? We'd ask for certain tests because DS was still having issues, infections and they refused. When they did conduct tests, they wouldn't give us the results. Then the local clinic itself there were issues with cross contamination, overcrowded waiting room... We just didn't/don't feel comfortable. But I still feel worried about offending. That we're doing the wrong thing...

We haven't been back to the local cf clinic in almost a year. I keep cancelling the appointment and they just reschedule for the next available slot. We still go to the CF clinic in the City a few times a year, but feel we need to establish a rapport with someone locally. We've got an appointment next month with our primary peds doctor who runs the local CF clinic to go over our concerns and issues. And I'm nervous, but DH and I just feel the local cf clinic is not in DS's best interest unless things change significantly.
 
R

Ratatosk

Administrator
Staff member
We've had the same issues with our local CF center. DS was diagnosed at a cf facility about 250 miles from home and they were so proactive, kept us in the loop -- encouraged us to take an active role in our son's care. Rude awakening when we started going to the local CF center when he was about 3 months old.

They couldn't believe we did CPT and nebs. Discouraged the nebs in fact. As they did with the Tobi our doctor in the City put him on ??? We'd ask for certain tests because DS was still having issues, infections and they refused. When they did conduct tests, they wouldn't give us the results. Then the local clinic itself there were issues with cross contamination, overcrowded waiting room... We just didn't/don't feel comfortable. But I still feel worried about offending. That we're doing the wrong thing...

We haven't been back to the local cf clinic in almost a year. I keep cancelling the appointment and they just reschedule for the next available slot. We still go to the CF clinic in the City a few times a year, but feel we need to establish a rapport with someone locally. We've got an appointment next month with our primary peds doctor who runs the local CF clinic to go over our concerns and issues. And I'm nervous, but DH and I just feel the local cf clinic is not in DS's best interest unless things change significantly.
 
R

Ratatosk

Administrator
Staff member
We've had the same issues with our local CF center. DS was diagnosed at a cf facility about 250 miles from home and they were so proactive, kept us in the loop -- encouraged us to take an active role in our son's care. Rude awakening when we started going to the local CF center when he was about 3 months old.

They couldn't believe we did CPT and nebs. Discouraged the nebs in fact. As they did with the Tobi our doctor in the City put him on ??? We'd ask for certain tests because DS was still having issues, infections and they refused. When they did conduct tests, they wouldn't give us the results. Then the local clinic itself there were issues with cross contamination, overcrowded waiting room... We just didn't/don't feel comfortable. But I still feel worried about offending. That we're doing the wrong thing...

We haven't been back to the local cf clinic in almost a year. I keep cancelling the appointment and they just reschedule for the next available slot. We still go to the CF clinic in the City a few times a year, but feel we need to establish a rapport with someone locally. We've got an appointment next month with our primary peds doctor who runs the local CF clinic to go over our concerns and issues. And I'm nervous, but DH and I just feel the local cf clinic is not in DS's best interest unless things change significantly.
 
M

Mommafirst

Guest
I think you know the answer to this one. Trust your instict!! If you are questioning the care they are giving, and they don't respond the way you want when you question, then its time to say adios. I hope you can find a better center relatively close to your home.
 
M

Mommafirst

Guest
I think you know the answer to this one. Trust your instict!! If you are questioning the care they are giving, and they don't respond the way you want when you question, then its time to say adios. I hope you can find a better center relatively close to your home.
 
M

Mommafirst

Guest
I think you know the answer to this one. Trust your instict!! If you are questioning the care they are giving, and they don't respond the way you want when you question, then its time to say adios. I hope you can find a better center relatively close to your home.
 
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