CF check ups by Primary Care Physician

2

2005CFmom

Super Moderator
Here is my situation that I want to get feed back on...
We just switched insurance and therefore had to change our Primary Doctor and CF clinic. My daughter had her first appointment today with her primary Dr so we could get a referral to a CF clinic. The Dr is working on the referral and even started the pre-auth. on her medications. He even did part of his residency in the CF ward of the hospital so he felt comfortable in treating her. Anyway, he seemed a little put-off (for lack of a better term) that we DEFINATELY wanted the referral to the authorized CF clinic. He wasn't rude about it or anything I just didn't get the "warm fuzzy's" from him.
So now to the part I want the feedback on... After I let him know that the CF clinic will do check-ups every 3 months, he said he also wanted to see her every 3 months. Does anyone else (or your child) see their primary doctor AND the CF doctor every 3 months? I'm glad he has taken an interest and is familiar with CF, but I don't know that this is really necessary.

And just to be clear, she WILL be seen by the CF clinic every 3 months. The part I am questioning is the Primary Care Doctor.

Thanks...
 
2

2005CFmom

Super Moderator
Here is my situation that I want to get feed back on...
We just switched insurance and therefore had to change our Primary Doctor and CF clinic. My daughter had her first appointment today with her primary Dr so we could get a referral to a CF clinic. The Dr is working on the referral and even started the pre-auth. on her medications. He even did part of his residency in the CF ward of the hospital so he felt comfortable in treating her. Anyway, he seemed a little put-off (for lack of a better term) that we DEFINATELY wanted the referral to the authorized CF clinic. He wasn't rude about it or anything I just didn't get the "warm fuzzy's" from him.
So now to the part I want the feedback on... After I let him know that the CF clinic will do check-ups every 3 months, he said he also wanted to see her every 3 months. Does anyone else (or your child) see their primary doctor AND the CF doctor every 3 months? I'm glad he has taken an interest and is familiar with CF, but I don't know that this is really necessary.

And just to be clear, she WILL be seen by the CF clinic every 3 months. The part I am questioning is the Primary Care Doctor.

Thanks...
 
A

anonymous

New member
We go to a CF specialist every 6 months in the City and go to a non-accredited CF Clinic every 6 months also, which is local. The only reason we go to the local clinic is to establish a rapport with the local doctors, plus we scedule the local appointments a month before we go to the City and have labs and xrays done and reports sent on to the CF specialist in the City ahead of time. That way if something shows up in the cultures, bloodwork or xrays -- the doctor in the City will have all that info before we arrive and has a chance to review it rather than call us later and say we got your labs back and need to change these drugs....

I hate the local clinic 'cuz one of the doctors seems threatened by the accredited clinic and always tries to find fault or scare us with gloom and doom predictions. If we have to increase the number of times we go to clinic, then we'd opt for the accredited one in the City. So far we are unable to get a referral to that clinic, so we pay more in copays. But well worth it 'cuz the local clinic is worthless.
 
A

anonymous

New member
We go to a CF specialist every 6 months in the City and go to a non-accredited CF Clinic every 6 months also, which is local. The only reason we go to the local clinic is to establish a rapport with the local doctors, plus we scedule the local appointments a month before we go to the City and have labs and xrays done and reports sent on to the CF specialist in the City ahead of time. That way if something shows up in the cultures, bloodwork or xrays -- the doctor in the City will have all that info before we arrive and has a chance to review it rather than call us later and say we got your labs back and need to change these drugs....

I hate the local clinic 'cuz one of the doctors seems threatened by the accredited clinic and always tries to find fault or scare us with gloom and doom predictions. If we have to increase the number of times we go to clinic, then we'd opt for the accredited one in the City. So far we are unable to get a referral to that clinic, so we pay more in copays. But well worth it 'cuz the local clinic is worthless.
 
A

anonymous

New member
A couple things I'ld think about is why go to the primary ped every 3 months? If your child's overall health is well up to date on shots and the primary care stuff is taken care of then his job is done. The CF stuff should go with the CF doc. Also, kids with CF have so many treatments, have to go to the doc so much why add extra visits unless it truly benefits the child' health. I hate going to the ped with my daughter, that's where all the sick kids are. We go to my daughter's ped for overall physicals and general kid stuff. We go to our local clinic every 3 months and then we go to a Large CF center once a year to keep up with all changes with CF stuff( this visit can take the place of one of our other local visits as long as they communicate, send records of visits etc. All our doc are fine with this situation(at least that's what they tell me). Even if your ped is "up on CF stuff" is his nursing staff, his coverage when he's away?

Just my thought.

Rebecca(mom to Sammy no CF and MAggie 3 with CF)
 
A

anonymous

New member
A couple things I'ld think about is why go to the primary ped every 3 months? If your child's overall health is well up to date on shots and the primary care stuff is taken care of then his job is done. The CF stuff should go with the CF doc. Also, kids with CF have so many treatments, have to go to the doc so much why add extra visits unless it truly benefits the child' health. I hate going to the ped with my daughter, that's where all the sick kids are. We go to my daughter's ped for overall physicals and general kid stuff. We go to our local clinic every 3 months and then we go to a Large CF center once a year to keep up with all changes with CF stuff( this visit can take the place of one of our other local visits as long as they communicate, send records of visits etc. All our doc are fine with this situation(at least that's what they tell me). Even if your ped is "up on CF stuff" is his nursing staff, his coverage when he's away?

Just my thought.

Rebecca(mom to Sammy no CF and MAggie 3 with CF)
 
L

LouLou

New member
Your primary care sounds personally interested in having a CF patient. You'll run into people in the med. field that are wowed by it because after all we are an oddity in the everyday world. PCP's should be primarily just a gate-way to the CF clinic. They shouldn't have to see your child to authorize a referrel. You may want to switch PCP's. My basic rule of thumb - if theirs major ego/attitude it isn't a place for you to be. I am 27 with CF. I live with my husband and work full time and am fully independent. The advantages to going to a PCP is they can offer help on non-CF related issues which really are very few since everything relates back to CF. I go once a year and recently my PCP ordered a bone scan to check for early osteoporosis. She said it would be a good thing to have a baseline reading of. My CF doc. when I mentioned it to him didn't think it was necessary but I have sinced learn that other CF'er adult ladies are getting this test to. It's good to have a second expert in the mix but they should respect that they know nothing about any illnesses to do with your child. My mom has a horror story of when I was a baby, after my diagnosis at age 2, we went to my PCP because I had a cold. He insisted on putting me on penecillin when this drug has no effect on pseudomonas. My mom put me on it then took me to my CF center where they told her next time to come directly to the CF center and promptly took me off the penecillin. If I were you I would try taking a stance with him and say that you can only come every 6 mo. due to efforts in reducing your child to germ exposure. This is something you should be considering if you haven't already that it's double the exposure. Also, it's not too much to ask that you never wait in a waiting room with your child. You should be taken straight back to a private setting until it is your turn to see the dr. Sorry if I sound like a 'know it all' but I thought my experience may be helpful.
 
L

LouLou

New member
Your primary care sounds personally interested in having a CF patient. You'll run into people in the med. field that are wowed by it because after all we are an oddity in the everyday world. PCP's should be primarily just a gate-way to the CF clinic. They shouldn't have to see your child to authorize a referrel. You may want to switch PCP's. My basic rule of thumb - if theirs major ego/attitude it isn't a place for you to be. I am 27 with CF. I live with my husband and work full time and am fully independent. The advantages to going to a PCP is they can offer help on non-CF related issues which really are very few since everything relates back to CF. I go once a year and recently my PCP ordered a bone scan to check for early osteoporosis. She said it would be a good thing to have a baseline reading of. My CF doc. when I mentioned it to him didn't think it was necessary but I have sinced learn that other CF'er adult ladies are getting this test to. It's good to have a second expert in the mix but they should respect that they know nothing about any illnesses to do with your child. My mom has a horror story of when I was a baby, after my diagnosis at age 2, we went to my PCP because I had a cold. He insisted on putting me on penecillin when this drug has no effect on pseudomonas. My mom put me on it then took me to my CF center where they told her next time to come directly to the CF center and promptly took me off the penecillin. If I were you I would try taking a stance with him and say that you can only come every 6 mo. due to efforts in reducing your child to germ exposure. This is something you should be considering if you haven't already that it's double the exposure. Also, it's not too much to ask that you never wait in a waiting room with your child. You should be taken straight back to a private setting until it is your turn to see the dr. Sorry if I sound like a 'know it all' but I thought my experience may be helpful.
 
T

thelizardqueen

New member
For as long as I can remember, I've always gone to my specialists every 3-4 months. As a kid, I would go to my primary doc is I had a cold, or something that wasn't related to CF, but now that I'm older, the only time I go to my primary doc, is for something completly unrelated to CF, or women problems. I always go to my CF doc for any type of lung problem. I don't waste my time with someone that doesn't specialize in CF, because I know that I will get better and quicker care from my specialist!
 
T

thelizardqueen

New member
For as long as I can remember, I've always gone to my specialists every 3-4 months. As a kid, I would go to my primary doc is I had a cold, or something that wasn't related to CF, but now that I'm older, the only time I go to my primary doc, is for something completly unrelated to CF, or women problems. I always go to my CF doc for any type of lung problem. I don't waste my time with someone that doesn't specialize in CF, because I know that I will get better and quicker care from my specialist!
 
2

2005CFmom

Super Moderator
Thanks for the replies everyone.
You guys mentioned the same concerns that were going through my mind. Spending time & money to see a Dr. that is not going to beneift my daughter, exposing her to germs on visits that aren't needed. But all of this is still fairly new to me..she was diagnosed Aug. 2005. I just wanted make she it just wasn't me thinking it was weird that her PCP wanted to see her that often.

But, I will see how the referral goes to the CF clinic. I don't know how aggresive the CF clinic in Loma Linda, CA is so I don't want to cut my ties to this guy, yet. If Loma Linda is very proactive instead of reactive I don't think I will bother going to the PCP more than once a year. On the other hand, if Loma Linda isn't very aggresive, maybe having this Dr would be a benefit in pushing more aggresive treatment, I don't know?...

Anyway, I don't think I'll make any waves just yet. But I guess after I get a better feel for the CF Clinic and for this Doctor, I'll know what to do.

Thanks again for everyones replys. It sure is nice to have this board to bounce ideas around.
 
2

2005CFmom

Super Moderator
Thanks for the replies everyone.
You guys mentioned the same concerns that were going through my mind. Spending time & money to see a Dr. that is not going to beneift my daughter, exposing her to germs on visits that aren't needed. But all of this is still fairly new to me..she was diagnosed Aug. 2005. I just wanted make she it just wasn't me thinking it was weird that her PCP wanted to see her that often.

But, I will see how the referral goes to the CF clinic. I don't know how aggresive the CF clinic in Loma Linda, CA is so I don't want to cut my ties to this guy, yet. If Loma Linda is very proactive instead of reactive I don't think I will bother going to the PCP more than once a year. On the other hand, if Loma Linda isn't very aggresive, maybe having this Dr would be a benefit in pushing more aggresive treatment, I don't know?...

Anyway, I don't think I'll make any waves just yet. But I guess after I get a better feel for the CF Clinic and for this Doctor, I'll know what to do.

Thanks again for everyones replys. It sure is nice to have this board to bounce ideas around.
 
A

anonymous

New member
i just want to ask a question i had a sister who was born with cf and she passed away when she was 3.5 she spent most

of her time in a mist tent i was wondering if they still used them with cf patients she passed in 1971

thanks donna
 
A

anonymous

New member
i just want to ask a question i had a sister who was born with cf and she passed away when she was 3.5 she spent most

of her time in a mist tent i was wondering if they still used them with cf patients she passed in 1971

thanks donna
 
A

anonymous

New member
Donna,
They don't use mist tents anymore. They use nebulizers that turns the medicine into a mist and then it is breathed directly to the lungs.
 
A

anonymous

New member
Donna,
They don't use mist tents anymore. They use nebulizers that turns the medicine into a mist and then it is breathed directly to the lungs.
 
D

Diana

New member
I have never heard of a mist tent but it sounds intriguing. My girls are very young so I only know what treatments they have received so far, not the older treatment styles. You might want to post your question as a new thread on the adults section maybe with the title of "Mist tent?" and see if you get some responses.

**As for the primary doctor stuff, my girls do have a local doctor who they see for immunisations, flu shots, general coldsand he is aware of the CF. He has never asked to see the girls regularly, only when we feel the need and he is happy to fill out CF related prescriptions when I haven't got time to travel to the hospital/Cf clinic for the meds. He is a great doctor and never pushes me into doing anything. The hospital send him reports on the girls progress after any tests have been done etc, so he knows generally what is happening anyway.

Sounds like your doctor does have his own agenda which is wrong for him to tgake up at the expense of yours and your childs time.
 
D

Diana

New member
I have never heard of a mist tent but it sounds intriguing. My girls are very young so I only know what treatments they have received so far, not the older treatment styles. You might want to post your question as a new thread on the adults section maybe with the title of "Mist tent?" and see if you get some responses.

**As for the primary doctor stuff, my girls do have a local doctor who they see for immunisations, flu shots, general coldsand he is aware of the CF. He has never asked to see the girls regularly, only when we feel the need and he is happy to fill out CF related prescriptions when I haven't got time to travel to the hospital/Cf clinic for the meds. He is a great doctor and never pushes me into doing anything. The hospital send him reports on the girls progress after any tests have been done etc, so he knows generally what is happening anyway.

Sounds like your doctor does have his own agenda which is wrong for him to tgake up at the expense of yours and your childs time.
 
D

Diana

New member
Was posting at the same time as anonymous was answering the question about the mist tent. Sorry.
 
D

Diana

New member
Was posting at the same time as anonymous was answering the question about the mist tent. Sorry.
 
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