Question for California CFers (or their families)

[peanut07]

We are at CHOC. We are new and have nothing to compare to but so far I

have been pleased with the service from the doctors. Each time we go we are

seen by at least 6 members of the team:

Pulmonoligist, Gastro, Dietician, Social Worker, Respiratory Tech, Nurse

Specialist/ Case Manager. They all are in the room at the same time and discuss

everything with me and amongst themselves. I really like the team approach. I

feel that keeps everyone on the same page.

Unfortunately I don't believe they are an accrediated center. However my limited

understanding of this has to do with the number of adult patients they have in a

pediatric facility.

Miller's Children Hospital in Long Beach also has a CF Center that is accrediated

but I have never been there. When were in testing our geneticist said she would

refer us to Miller's if CHOC wouldn't treat us. So far that hasn't been an issue so

we haven't needed to go elsewhere.

Good Luck

 

[peanut07]

We are at CHOC. We are new and have nothing to compare to but so far I

have been pleased with the service from the doctors. Each time we go we are

seen by at least 6 members of the team:

Pulmonoligist, Gastro, Dietician, Social Worker, Respiratory Tech, Nurse

Specialist/ Case Manager. They all are in the room at the same time and discuss

everything with me and amongst themselves. I really like the team approach. I

feel that keeps everyone on the same page.

Unfortunately I don't believe they are an accrediated center. However my limited

understanding of this has to do with the number of adult patients they have in a

pediatric facility.

Miller's Children Hospital in Long Beach also has a CF Center that is accrediated

but I have never been there. When were in testing our geneticist said she would

refer us to Miller's if CHOC wouldn't treat us. So far that hasn't been an issue so

we haven't needed to go elsewhere.

Good Luck

 

[peanut07]

We are at CHOC. We are new and have nothing to compare to but so far I

have been pleased with the service from the doctors. Each time we go we are

seen by at least 6 members of the team:

Pulmonoligist, Gastro, Dietician, Social Worker, Respiratory Tech, Nurse

Specialist/ Case Manager. They all are in the room at the same time and discuss

everything with me and amongst themselves. I really like the team approach. I

feel that keeps everyone on the same page.

Unfortunately I don't believe they are an accrediated center. However my limited

understanding of this has to do with the number of adult patients they have in a

pediatric facility.

Miller's Children Hospital in Long Beach also has a CF Center that is accrediated

but I have never been there. When were in testing our geneticist said she would

refer us to Miller's if CHOC wouldn't treat us. So far that hasn't been an issue so

we haven't needed to go elsewhere.

Good Luck

 

[peanut07]

We are at CHOC. We are new and have nothing to compare to but so far I

have been pleased with the service from the doctors. Each time we go we are

seen by at least 6 members of the team:

Pulmonoligist, Gastro, Dietician, Social Worker, Respiratory Tech, Nurse

Specialist/ Case Manager. They all are in the room at the same time and discuss

everything with me and amongst themselves. I really like the team approach. I

feel that keeps everyone on the same page.

Unfortunately I don't believe they are an accrediated center. However my limited

understanding of this has to do with the number of adult patients they have in a

pediatric facility.

Miller's Children Hospital in Long Beach also has a CF Center that is accrediated

but I have never been there. When were in testing our geneticist said she would

refer us to Miller's if CHOC wouldn't treat us. So far that hasn't been an issue so

we haven't needed to go elsewhere.

Good Luck

 

[peanut07]

We are at CHOC. We are new and have nothing to compare to but so far I
<br />
<br />have been pleased with the service from the doctors. Each time we go we are
<br />
<br />seen by at least 6 members of the team:
<br />
<br />Pulmonoligist, Gastro, Dietician, Social Worker, Respiratory Tech, Nurse
<br />
<br />Specialist/ Case Manager. They all are in the room at the same time and discuss
<br />
<br />everything with me and amongst themselves. I really like the team approach. I
<br />
<br />feel that keeps everyone on the same page.
<br />
<br />Unfortunately I don't believe they are an accrediated center. However my limited
<br />
<br />understanding of this has to do with the number of adult patients they have in a
<br />
<br />pediatric facility.
<br />
<br />Miller's Children Hospital in Long Beach also has a CF Center that is accrediated
<br />
<br />but I have never been there. When were in testing our geneticist said she would
<br />
<br />refer us to Miller's if CHOC wouldn't treat us. So far that hasn't been an issue so
<br />
<br />we haven't needed to go elsewhere.
<br />
<br />Good Luck
<br />

 

[froggymama]

Juls, I sent you a private message, but I'm such a computer moron, let me know if you don't receive it. You may email me at egussie1977@aol.com too! Take care. Elise

 

[froggymama]

Juls, I sent you a private message, but I'm such a computer moron, let me know if you don't receive it. You may email me at egussie1977@aol.com too! Take care. Elise

 

[froggymama]

Juls, I sent you a private message, but I'm such a computer moron, let me know if you don't receive it. You may email me at egussie1977@aol.com too! Take care. Elise

 

[froggymama]

Juls, I sent you a private message, but I'm such a computer moron, let me know if you don't receive it. You may email me at egussie1977@aol.com too! Take care. Elise

 

[froggymama]

Juls, I sent you a private message, but I'm such a computer moron, let me know if you don't receive it. You may email me at egussie1977@aol.com too! Take care. Elise

 

[beccasmom]

We are also in Southern California--the closest center to us is Children's LA and I hated it. We actually get most of our care at UCLA that while it is not currently an accredited center is working towards being one. We went for a second opinion at Stanford and they felt UCLA was great, really aggressive and treating my daughter really well. We go to Stanford once a year, and UCLA the rest of the time. The doctors at UCLA are awesome. The pulmonologist actually called me from her vacation when my daughter was sick a few weeks ago. Stanford and UCLA have done a really good job communicating as well.

 

[beccasmom]

We are also in Southern California--the closest center to us is Children's LA and I hated it. We actually get most of our care at UCLA that while it is not currently an accredited center is working towards being one. We went for a second opinion at Stanford and they felt UCLA was great, really aggressive and treating my daughter really well. We go to Stanford once a year, and UCLA the rest of the time. The doctors at UCLA are awesome. The pulmonologist actually called me from her vacation when my daughter was sick a few weeks ago. Stanford and UCLA have done a really good job communicating as well.

 

[beccasmom]

We are also in Southern California--the closest center to us is Children's LA and I hated it. We actually get most of our care at UCLA that while it is not currently an accredited center is working towards being one. We went for a second opinion at Stanford and they felt UCLA was great, really aggressive and treating my daughter really well. We go to Stanford once a year, and UCLA the rest of the time. The doctors at UCLA are awesome. The pulmonologist actually called me from her vacation when my daughter was sick a few weeks ago. Stanford and UCLA have done a really good job communicating as well.

 

[beccasmom]

We are also in Southern California--the closest center to us is Children's LA and I hated it. We actually get most of our care at UCLA that while it is not currently an accredited center is working towards being one. We went for a second opinion at Stanford and they felt UCLA was great, really aggressive and treating my daughter really well. We go to Stanford once a year, and UCLA the rest of the time. The doctors at UCLA are awesome. The pulmonologist actually called me from her vacation when my daughter was sick a few weeks ago. Stanford and UCLA have done a really good job communicating as well.

 

[beccasmom]

We are also in Southern California--the closest center to us is Children's LA and I hated it. We actually get most of our care at UCLA that while it is not currently an accredited center is working towards being one. We went for a second opinion at Stanford and they felt UCLA was great, really aggressive and treating my daughter really well. We go to Stanford once a year, and UCLA the rest of the time. The doctors at UCLA are awesome. The pulmonologist actually called me from her vacation when my daughter was sick a few weeks ago. Stanford and UCLA have done a really good job communicating as well.

 

[usedtobeinca]

Thanks everyone! Sorry I haven't returned PMs, haven't been on in a while. We're unsure of where exactly we'll land but it will likely be in SoCal nearer to family - anywhere between Ventura and San Diego. Sounds like a lot of choices await us. We're looking at a 2-3 year relocation time frame so we have plenty of opportunity to do the research.

I am also curious about which insurance carriers allow access to which facilities and what type of coverage they offer. We're currently w/Kaiser NW - great coverage + access to the major regional medical center for ped CF care up here. I'm not sure if the same would be true in CA - though I suppose it depends entirely on the plan. Any thoughts on that as well would be greatly appreciated.

 

[usedtobeinca]

Thanks everyone! Sorry I haven't returned PMs, haven't been on in a while. We're unsure of where exactly we'll land but it will likely be in SoCal nearer to family - anywhere between Ventura and San Diego. Sounds like a lot of choices await us. We're looking at a 2-3 year relocation time frame so we have plenty of opportunity to do the research.

I am also curious about which insurance carriers allow access to which facilities and what type of coverage they offer. We're currently w/Kaiser NW - great coverage + access to the major regional medical center for ped CF care up here. I'm not sure if the same would be true in CA - though I suppose it depends entirely on the plan. Any thoughts on that as well would be greatly appreciated.

 

[usedtobeinca]

Thanks everyone! Sorry I haven't returned PMs, haven't been on in a while. We're unsure of where exactly we'll land but it will likely be in SoCal nearer to family - anywhere between Ventura and San Diego. Sounds like a lot of choices await us. We're looking at a 2-3 year relocation time frame so we have plenty of opportunity to do the research.

I am also curious about which insurance carriers allow access to which facilities and what type of coverage they offer. We're currently w/Kaiser NW - great coverage + access to the major regional medical center for ped CF care up here. I'm not sure if the same would be true in CA - though I suppose it depends entirely on the plan. Any thoughts on that as well would be greatly appreciated.

 

[usedtobeinca]

Thanks everyone! Sorry I haven't returned PMs, haven't been on in a while. We're unsure of where exactly we'll land but it will likely be in SoCal nearer to family - anywhere between Ventura and San Diego. Sounds like a lot of choices await us. We're looking at a 2-3 year relocation time frame so we have plenty of opportunity to do the research.

I am also curious about which insurance carriers allow access to which facilities and what type of coverage they offer. We're currently w/Kaiser NW - great coverage + access to the major regional medical center for ped CF care up here. I'm not sure if the same would be true in CA - though I suppose it depends entirely on the plan. Any thoughts on that as well would be greatly appreciated.

 

[usedtobeinca]

Thanks everyone! Sorry I haven't returned PMs, haven't been on in a while. We're unsure of where exactly we'll land but it will likely be in SoCal nearer to family - anywhere between Ventura and San Diego. Sounds like a lot of choices await us. We're looking at a 2-3 year relocation time frame so we have plenty of opportunity to do the research.
<br />
<br />I am also curious about which insurance carriers allow access to which facilities and what type of coverage they offer. We're currently w/Kaiser NW - great coverage + access to the major regional medical center for ped CF care up here. I'm not sure if the same would be true in CA - though I suppose it depends entirely on the plan. Any thoughts on that as well would be greatly appreciated.