Do you all go through a CF center for care? My daughter is 10 months old and we don't go to a "center" but we are at Mayo which used to be accredited (?) but I'm just wondering what your opinions are on this? She's been healthy thus far (diagnosed via newborn screen and subsequent sweat tests and DNA testing at 6 wk) so I'm not worried about anything major at this time and don't know that I necessarily would be, I feel very comfortable with her DR (we are most likely moving up north and I would like to keep Mayo as her CF care clinic, am skeptical of U of M) I just read a lot of your questions/answers and see that many of you do a lot more therapy than we do with my daughter (CPT 2x/day)...wondering if the common treatment is to do more than what we're doing?...thoughts greatly appreciated!!
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CF centers
- Thread starter babybear
- Start date
Do you all go through a CF center for care? My daughter is 10 months old and we don't go to a "center" but we are at Mayo which used to be accredited (?) but I'm just wondering what your opinions are on this? She's been healthy thus far (diagnosed via newborn screen and subsequent sweat tests and DNA testing at 6 wk) so I'm not worried about anything major at this time and don't know that I necessarily would be, I feel very comfortable with her DR (we are most likely moving up north and I would like to keep Mayo as her CF care clinic, am skeptical of U of M) I just read a lot of your questions/answers and see that many of you do a lot more therapy than we do with my daughter (CPT 2x/day)...wondering if the common treatment is to do more than what we're doing?...thoughts greatly appreciated!!
Do you all go through a CF center for care? My daughter is 10 months old and we don't go to a "center" but we are at Mayo which used to be accredited (?) but I'm just wondering what your opinions are on this? She's been healthy thus far (diagnosed via newborn screen and subsequent sweat tests and DNA testing at 6 wk) so I'm not worried about anything major at this time and don't know that I necessarily would be, I feel very comfortable with her DR (we are most likely moving up north and I would like to keep Mayo as her CF care clinic, am skeptical of U of M) I just read a lot of your questions/answers and see that many of you do a lot more therapy than we do with my daughter (CPT 2x/day)...wondering if the common treatment is to do more than what we're doing?...thoughts greatly appreciated!!
I would go to a CF center. You mention she's healthy now, but preventative care is what will make your daughter live longer.
So when you treat something that has come up, it's too late. You should have been doing things to actively prevent CF complications from occuring.
This is why a CF center can be so useful....
So when you treat something that has come up, it's too late. You should have been doing things to actively prevent CF complications from occuring.
This is why a CF center can be so useful....
I would go to a CF center. You mention she's healthy now, but preventative care is what will make your daughter live longer.
So when you treat something that has come up, it's too late. You should have been doing things to actively prevent CF complications from occuring.
This is why a CF center can be so useful....
So when you treat something that has come up, it's too late. You should have been doing things to actively prevent CF complications from occuring.
This is why a CF center can be so useful....
I would go to a CF center. You mention she's healthy now, but preventative care is what will make your daughter live longer.
So when you treat something that has come up, it's too late. You should have been doing things to actively prevent CF complications from occuring.
This is why a CF center can be so useful....
So when you treat something that has come up, it's too late. You should have been doing things to actively prevent CF complications from occuring.
This is why a CF center can be so useful....
It's very important to be proactive, even if there don't appear to be symptoms at this time. Proper lung care, cultures to see if anything is growing, bloodwork on a regular basis, so if there IS something going on, it can be addressed asap.
The other thing to consider is while you may like your doctor and are comfortable with him... Are you getting the best care possible? I <u>like</u> one of our doctors at the local cf clinic -- he's a nice guy, very personable, but our primary CF doctor in the City (250 miles away) is much more proactive.
The other thing to consider is while you may like your doctor and are comfortable with him... Are you getting the best care possible? I <u>like</u> one of our doctors at the local cf clinic -- he's a nice guy, very personable, but our primary CF doctor in the City (250 miles away) is much more proactive.
It's very important to be proactive, even if there don't appear to be symptoms at this time. Proper lung care, cultures to see if anything is growing, bloodwork on a regular basis, so if there IS something going on, it can be addressed asap.
The other thing to consider is while you may like your doctor and are comfortable with him... Are you getting the best care possible? I <u>like</u> one of our doctors at the local cf clinic -- he's a nice guy, very personable, but our primary CF doctor in the City (250 miles away) is much more proactive.
The other thing to consider is while you may like your doctor and are comfortable with him... Are you getting the best care possible? I <u>like</u> one of our doctors at the local cf clinic -- he's a nice guy, very personable, but our primary CF doctor in the City (250 miles away) is much more proactive.
It's very important to be proactive, even if there don't appear to be symptoms at this time. Proper lung care, cultures to see if anything is growing, bloodwork on a regular basis, so if there IS something going on, it can be addressed asap.
The other thing to consider is while you may like your doctor and are comfortable with him... Are you getting the best care possible? I <u>like</u> one of our doctors at the local cf clinic -- he's a nice guy, very personable, but our primary CF doctor in the City (250 miles away) is much more proactive.
The other thing to consider is while you may like your doctor and are comfortable with him... Are you getting the best care possible? I <u>like</u> one of our doctors at the local cf clinic -- he's a nice guy, very personable, but our primary CF doctor in the City (250 miles away) is much more proactive.
sheree2065
New member
Hi, I go to a CF clinic in Jax Florida, My daugther just came off a pic line
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
sheree2065
New member
Hi, I go to a CF clinic in Jax Florida, My daugther just came off a pic line
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
sheree2065
New member
Hi, I go to a CF clinic in Jax Florida, My daugther just came off a pic line
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
sheree2065
New member
Hi, I go to a CF clinic in Jax Florida, My daugther just came off a pic line
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
sheree2065
New member
Hi, I go to a CF clinic in Jax Florida, My daugther just came off a pic line
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months
and the Dr. told me that all I had to do for now is cpt's he said there is no proof the breathing treatmets do anything unless there is a problem. she does take vitamins and creon 5 everyday but that is all for now. I hope this helps
Sheree
mother to Jordan dx at 6 weeks newborn screening test now 4 months